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Kelly, Only you can answer that question to continue or not. What is the usual time a regular rheum would give his patient, to respond to Rituxan so that you put the goal of doing it just for research aside. Do they give them a full year, before determining it has been given the full chance of working?
Another thought: One good aspect of having a long term relationship with your doc , is that they can see that you are coming in with the assistance of a new brace or walker ,etc. but still there comes a point where we may still have to connect the dots for them. If you were my sister by blood, i would say you need to tell your doc specifically what you cannot do anymore, since you have commented in the blog you are becoming more disabled but they arent noticing it. Tell them.. spell it out.. what have you got to lose? Rheums see many patients a day, and it is ok that we have to sometimes remind them of something or tell them in details about our needs and current status…. Or to ask for a consult with a urologist so they might take a look inside your bladder and make sure it is alright. Just my thoughts,based on some of my past experiences….
I have been on Rituxen for about 3 years I love it, I have been through alot of other but this is the best, yes it is a different feeling you do not have the energy but I have found it is deep down to the bone good feeling for me, also it takes a long time to feel the effects you think it’s not working then one day you realize oh where is my pain. I have been dealing with this disease for almost 25 years and yes I have it from head to toe.
There has been a number of times I’ve thought of posting over the last few months but somehow haven’t quite got around to it! But I’ve just read your post above and I really don’t know why it amazes me Kelly with the luck you’ve had over the time that I’ve been visiting here.
Kelly, you are one of the most selfless people I have ever had the pleasure to know, but for two Doctors to suggest that your decision whether to continue on the trial should be based on your ‘contribution to humanity’ rather than any measurable improvement with your own disease is to me, beyond reason.
Oh and as an added opinion, having just read about Dr Tylenol, his opinion should count for nothing at all and certainly not Rheumatology. Someone with as little compassion and understanding of pain should not be a doctor.
I really hope and pray that something changes for you. Please take care Kelly
Kelly..if I were in your position…I would not take the med. I am upset at your being told to do it for humanity!! Thats pretty narrow minded in my view and puts paramount importance on their trial!!! Your well being needs to be paramount…not their trial!!! I was on Humira for about a year and nearly died from pneumonia. i had it 4 times in a six month period with the last bout landing me in the hospital for a week and on several antibiotics at the same time. The humira did help my RA BUT….what would it mean if I got sick again and died?? The respiratory specialist told me that I should not take it again. Rheum said take it, GP said take it..I went with my intuition and said NO!! When you cannot get your breath, get worse every day and are told you may “pass away from this illness”…it was time for me to use my common sense. I wish you the best in your decision but urge you to make the clinical trial your last consideration! Best to you..will pray for you!
Thank you. You’re right and I will. I think I put something at the end like I’ll decide based on my chances of improvment. I’m looking for some research on that.
Kelly, my thoughts are to move on! Find that good rheumy we all long for. Take care of yourself. It is not worth another year of hell. New drugs coming out might just be the thing. I have a doctor friend in Austria that can get me the new drugs that are out in Europe. Let me know…I can hook you up!
Are you going to try them?
No, Kelly. I am doing good on Humira. I hate to change something going good. But if I were having problems, I would. We hosted an exchange student from Austria a few years ago and her father is a doctor. We went to Europe to visit them the year after she went back. They said they would treat me if I needed drugs that I couldn’t get here in the US. The mother and daughter are coming to visit the end of June for a couple of weeks . They said they would bring whatever meds I would need.
I agree don’t change ANYTHING if treatment is working.
Theresa,
What are the names of the new medications for RA coming out of Europe? I’d like to research them as I am currently in a limbo state between treatments due to infections.
Kelly, Year before last I had a sinus infection for 3 months due to Rituxan. 3 trips to GP and rounds of antibiotics. Finally went to a ENT had CT scan of sinuses and scope. Was on 2 types of antibiotics for a month and high doses of prednisone to get rid of it. I am also getting many bladder infections. Have one now as I write this, had Rituxan recently.
Lois, I can’t believe that. Everyone around me just acted like it was me. “Why are you getting this?” “Are you sure it’s a clean catch?” “Did you take all your antibiotics?” or whatever. No one has suspected the rituxan made a difference but me. The silence when I keep asking about this – is deafening.
It’s such a shame (or sham) that you have to be burdened with this decision. Bless your heart, Kelly, but it appears that they’re trying to make a martyr of you. I say – leave that for animal testing (yes, call me inhumane), but I’m throwing the bs flag on this one. No need to take one for the team. You’ve already gotten hosed once this week! Love you! ~LWW
lol.
Kelly,
I have been reading your blog for awhile now and boy do I relate. When I was a teenager they labeled me with JRA. Into my twentys had no problems until I got married and started having children. After each pregnancy I would feel so bad for months, joints swelling, tired, etc. Doctors saying your a mom now thats normal. I had five children. Well story told about 24 years ago I had such a bad flare I couldn’t use my hands and it was hard to walk. Was sent to so many specialists and then finally as athe last resort was sent to an RA doctor who confirmed that it was Ra after a few months of testing and watching. I also have been on most of the drugs including Rituxin. Had a very bad reaction on that. I am currently on Actemra. Seems to work some what but not completely. I have had both my thumb joints replaced because of Ra. I have neck and lower back problems which have and are being treated with injections. I also have recurring bladder infections. Seems to be every two months . Doctor want to send me to a specialist if it recurres again. This has been going on for the last two years. I wish there was one doc we could go to not one for this and one for that. Kelly thank you for all you do and the decision has to be yours alone and you have to feel ok with that. I think my RA seems like yours. My tests never look too bad but when you look at joints and changes in my physical functions you know the disease is on the march. Thank you again Kelly and I wish you well. Janice
Thank you Janice. It’s great to hear from a mom of 5 fighting RA. I think we r a small awesome club. Doing a lot of thinking today – the actemra never worked but dr stopped it after only 4 months. not many think it could work after that. I wish we could compare genes to help us decide.
Kelly, I have been on the Actemra for two years this Feb. my RA doctor’s clinc was one of the trial spots here in Minnesota. I went on it when the FDA approved it. I have been on everything including the Rituxin. The Actemra seemed to work well at the beginning and now not as well. I also take the methotrexate with folic acid. Not sure about that either. I hate taking pills I hate taking meds but when you feel you can’t get out of bed I know it is time for something. I have horrible night sweats about twice a night which of course interrupts your sleep pattern. It is a vicious circle. The best thing I can do is keep as busy as I feel I can without over doing too much. Take care and I will keep touch. Janice
Kelly, I have never commented on here since I have only been diagnosed since January. I found your amazing site in December while being tested, and it has been invaluable! Thank you for everything you do!
Usually, I just read and absorb all the information provided by everyone on here, but this morning I feel like I HAVE to comment. Coincidentally, just yesterday morning I read this article from Seminars in Hematology, Vol 47, No 2, April 2010, pp 187–198 called Rituximab-Associated Infections. Here’s the link to the article: http://www.iwmf.com/docs/Rituximab-Associated_Infections-Seminars_in_Hematology.pdf Its main focus is on more serious infections (meningitis, heb B, etc.) but right in the beginning it says, “Continued use of this agent has brought to light a modest increase in infectious risk that underlines the complexities of the immune response. Infectious complications possibly related to rituximab have
been reported from each of the clinical disciplines where it is commonly used.”
Obviously, as you said, it’s a decision that only you can make, but I always feel like more information is a good thing. Good luck with your decision.
Thank you for speaking up Amber so I could get to meet you. I’ll take a look at the article.
Hi Lyn,
you are right about infections being part of the side effects from RA treatments, MTX included. They all immune suppressants, this is why we get sick more often. My RA insists me to report to her every little thing; one time i cut my finger and didn’t think much of it. But this little thing didn’t heal for a week and than got infected. I tried to use Neosporin, nothing worked and finally I called her.
She was upset that I didn’t call her earlier to get antibiotics b/c this is not a joke. Who worries about small cut and calls for antibiotics, right? Well, according to her, as small as this looks, it could be fatal for someone on RA treatments. So I learned my lesson since. 😉
I hear you and understand where you coming from regarding the treatment. You right, nobody can suggest to you anything, this has to be your decision sweet heart. I bet many of us go through same thing. Especially in the beginning when one doesn’t see any joint damages yet, we think why should I go on such harsh treatments?
Coming from someone who “been there – done that” and who NOT by choice wasn’t diagnosed on time and who got severe damages from RA by now (I am 57), who had many joint surgeries (first at age of 25) – if you have RA, you must be treated. Forgive me for playing a Dr here, but I dont want you to sit 10 years from now thinking why didn’t I do that back than? I do that, but if I would be treated on time, I wouldn’t be here. You still young and have great chance to have a great quality of life in the future – who doesn’t want that, right?
This is just my 2 cents.
Wishing you all the best and great results with your treatments.
Linda57
Kelly, I’m going to play the devil’s advocate here. Isn’t being prone to infection a side-effect of ALL the biologic drugs? I have been on Enbrel for 12 years now and have had to stop for a week or so many, many times for infections, but, thank God, it has been worth it for me. Together with the other drugs in my RA cocktail, I have been saved from a sure fate of being in a wheelchair by now. I was one of the lucky ones that had immediate effects, but, over the years,(55) there were other drugs that took months to take effect.So I personally would suggest hanging in for a bit longer if there is nothing else new being offered yet.Just sayin’ and sending big gentle hugs.
yes and it’s also a side effect of RA itself, but it has never happened to me before.
It would be so much easier to count the cost if the drug had an effect on my RA symptoms.
I wish we didn’t have to decide blindly like this whether it would work.
Lyn, Just to play devil’s advocate to your devil’s advocate – I was reading an article recently about infection risks and biologics and based on this research you are correct, the risk of infection is slightly increased with all of the biologics, however, I was surprised that Rituxan had a higher risk profile than the other biologics. Something that would be good to know if you were making a choice of what drug to try. The other thing I really didn’t know was that RA itself increased your risk of infection. The article says that the risk of infection that is due to the disease is much higher than that resulting from the use of biologics but combining the two is additive. I wouldn’t have guessed that having RA would increase your risk of infection – you would think that having your immune system working overtime would give you some protection but I guess it’s not doing it’s job right the whole way around. The article was on MedPage – I’ll see if I can find a link.
Kelly, participation in clinical trials requires your informed consent…ie not the doctors’ consent, not blind faith, not consent from me or anyone else who could possibly benefit in the future, but consent from you after you have received all the information available about the risks involved & taking into account what you know about your body.
Having been through part of this trial you are more informed than you were at first and you must have been told that you can drop out at any time. The data they already have from you still stands; if you drop out that would also become part of the data and tells its own story.
Under clinical trials conditions you must not be pushed or persuaded to do something you do not want to consent to.
You are taking this drug and dealing with its consequences in the real world, you’re not dealing with hypothetical ‘what ifs’ which is the position your doctors are in. Remember, they’re only ever practising!
It’s your decision and it’s your life…thank Goodness you have great advisors, good friends and prayer to see you through this decision and its consequences.
I wish you well in making your decision, free of bullies, in the light of all you know and being honest with yourself. Penny.
Kelly you must think of yourself, and your family in this situation. Those are the two most important factors and truly the only factors that you really need to consider.
Hi Kelly,
I want to do for you what you do for all of us… Only you know what is best for you. Unfortunately we have to be our best and sometimes only advocate. People who do not live in constant pain or disability very rarely understand. You are very informed and have more knowledge than most rheumys.
For what it is worth here are my thoughts – I stay on my meds that seem to do nothing with the hope that they may be doing something to stop or slow bone erosion. I do not have frequent infections… In fact I used to constantly have infections and miraculously stoped once on biologics. I hear you saying you want to stop and I think you should if that is your gut feeling still after your final research!
Thinking of and praying for you!
I think you are putting your health at great risk if you continue with the clinical trial. Are you willing to be the sacrifice for science? What if the next infection is in your lungs… what if your body weakened from the last 6 months of infection can’t handle the next infection and your kidneys begin to shut down? It’s just my 2 cents, but I think you should say no and give your body some recovery time.
Iam so sorry you hear you having to make this decision…..Iam 48 and have been fighting severe RA for 5 years now and if it weren’t for RA Warrior and my nine year old daughter I would be doing it completely alone. I gave up my Rheumy last year (he should just go play golf…..USELESS!!) unfortunately where I live (Vancouver Island, BC) there are only a couple and I’ve not liked any. I have made the choice to take no meds except 15mg of prednisone every day (if I didnt I dont walk) Iam one of the very rare who have zero side effects from it (that Iam aware of) bone density tests are good so far.
There are days my daughter has to dress me,start my car to take her to school…etc…cant pick up a knife to make her sandwitch….and it scares the hell out of me…..however…..to me its simple common sense and NO THE BENEFITS DO NOT OUTWAY THE RISKS…..at all…..it would be different if they might “cure” me….but all they can say is they “MIGHT HELP SLOW THE PROGRESSION”….meanwhile….instead of fighting one disease I now get some more because of the drug????????????……Im sorry…..it makes no sense to me…..none. I do respect everyones opinion and we all have to do whats best….but for a Doc to tell you to do it for humanity??????……shame on him…..Ive learned more from you and the people on this site than any Doctor…you are an inspiration to us all…good luck with your decision…my prayers are with you.
Karla
Kelly, just as RA is a little bit different with each of us so are our responses to the drugs they treat us with. I am so happy when i hear that someone has had good results with a particuliar drug. That is what we all strive for, to find the one treatment that works for us and makes living with RA better. But drugs either work one way or another or they don’t. They can have good results or no results at all. They can have side effects or adverse reactions. . We have to weigh the benefit risk everytime we we try something new. It’s scary to take the drugs we do when you read about all the potential side effects and adverse reactions. I have had RA for 5 years. Severe they tell me. My labs are mostly normal though and do not match the symptoms that i have. I still try to convince myself even now that i do not have it but i know i do. It wont be denied. But when i have my really bad days I know i will try almost anything for relief. But when i try new medication treatments and there are no improvements or there are horrible side effects or outcomes..Well I figure its time to move on to what ever is next. How long do we have to wait to see improvement on a new drug? It might be acceptable to wait another round if we had something to measure improvement by or could see a change. Maybe labs are getting better as we understand numbers. Or even that a the drug is reaching an acceptable level in our bodies. Maybe the swelling and inflammation has lessened somewhat and shows even a slight improvement. Maybe the pain is more manageable. But when we have nothing to measure any kind of improvement then it is difficult to continue. Wouldnt you think that if it was going to work you would notice something by now? I would think so. I started on placqenyl, then methotrexate. It bothered my stomach and gave me side effects so they added leucovorin. Then the prenisone gets added in and some temporary relief but soon that is not enough. Then after much deliberation i tried Humira. OMG it was a miracle drug. The next day and weekend i was pain free. I thought i had found my miracle but it was short termed. After a few months the shot did not hold me for two weeks..everything came back all the pain, inflammation swelling. My Dr tried to prescribe it every week but insurance denied it. So the predinsone went up to get me through. Then my Dr asked me if i wanted to try Rituxan. I was scared after reading all of the side effects and adverse reactions it had. They were worse than the chemo my brother-in-law was taking for pancreatic cancer. But i felt so bad i tried it. The only thing it did for me was effect me during the infusion..i would loose my gag reflex so they would give me meds to counter act that so i could take it. Other than that i had no noticeable effect or response to it other than being immunosuppressed. Next we tried Orencia infusions. I had three and each time the side effects were different so they thought it was not the drug causing it. But after the 3rd infusion the side effects/adverse reactions were so bad that living with my RA as it was looked pretty good. It took me three months to come off of the effects of that drug. I was given a drug holiday to clear my system. Then when they tried to put me back on my old med routine i became hypersensitive to the drugs i use to take. I could not take the methotrexate anymore not even in smaller doses. After about 6 mos i was able to go back on Humira. I have been on it for almost two years again. It is not my cure or the fix all, but for now i am better on it than on what i had tried. I live with pain and swelling everyday to some degree but I do not want to feel the way i did on Orencia ever again. I know that they have some new drugs out but my Rheum Dr felt like my body had been through too much at the moment to throw something else at it again. Will i try another drug again…probably..but not today. But each time we do we need to weigh the benfit risk of the treatment for ourselves. Not measured by or for anyone else. Which end bears the weight ? In your case you feel no improvement at all is what i understand. But ask yourself is there anything that is measurable to give you any inclination that this drug is doing something positive for you ? I so..weigh that against other side which is the infections and their effect or toll on your body. Is it worth it to go thru this if you have improvement ? Perhaps. But if no imporvemnet is seen then the long term infections with the chance of them mutating and becoming antibiotic resistant or causing more disabilty to your body with chances of complications might just tip the scale to stop the cycle and the drug. Whatever you decide will be right for you, because only you know how it weighs. If you quit you are not a failure. You are always a trooper trying to find a way to help your body. Fighting for its right to be better, feel better and work better. Just as you fight for all of us who think you are our trooper in the war against RA.
I keep you in my thoughts and prayers
Good luck, Kelly with whatever decision you make.
Kelly, I’ve been fighting this disease for 27 years and I wish I had learned at the beginning to put myself first. Because the ones telling you to do this for humanity won’t be there for you when the damage from the disease and possibly the drug damage have completely taken your independence. You make your decision based on what will be best for you! Keeping you in my prayers sweet girl….
But I truly believe you should think of yourself here. I would hate to see you suffer from such horrible infections for so long a period of time. You are a real “warrior” and we all appreciate your efforts in bringing awareness of RA and its treatments to health care providers and patients alike. Without your blog and your diligent work I would never have found this highly informative place of gathering with fellow RA friends. Sending prayers your way.
When I first started on meds I was dissappointed that the drugs would not completly get rid of my flares or damage. Then I realized that at the rate of speed my early damage occurred the progression had slowed considerably.Would you be even worse right now without the Rituxan?
No. I’ve been w/out meds or with meds and I can tell. No diff w/meds. I guess yes there is a small possibility that it helped in some unseen way – that’s why I take mtx also & what I tell others – don’t give up… But there will be possibly other treatments I will not be able to try because it takes a long time for b cells to come back up. And its too dangerous.
It sounds to me like you have already answered your question about whether or not to continue treatment with this drug. I used to work with statistics. They can be manipulated in many ways. It is, however, very important to make your mark as a patient who a)has seen no positive effects and b)drops out due to lack of positive response. That is just as invaluable as continuing in the hope of benefiting others. Maybe more so. How am I going to benefit from you continuing with this drug? As a fellow patient, I can’t benefit from anything except your honesty about your treatment and lack of positive outcome.
Thank you for caring enough to ask the rest of us what we think.
Personally, if it were me, I would not take it if it was not helping me. The medications we take for our arthritis have very serious side effects. These are drugs nobody would take if there weren’t some sort of payoff (relief of symptoms; less damage to our bodies, etc.). I am also curious if it is a clinical trial (and maybe you said and I missed it) are you sure you are getting the actual medication? I don’t think you owe it to “humanity” to put toxic medication into your system that is not helping you. I think you owe it to yourself and your family to keep yourself healthy. Just my thoughts there.
I am so angry that your doctors posed that to you….like you should be willing to put YOUR LIFE at risk to help with a clinical trial! I had a friend who continued to take chemo until her death…a part of a clinical trial and she wanted to “help others”..but HUGE difference..she was dying of her cancer anyway.
YOU ARE NOT DYING of RA (at least not now)…so how in the world could any doctor ask you to take a drug that is NOT helping you, IS causing horrible infections that are taking months out of your life…not to mention costing a fortune that someone is paying….and put your life at risk.
DO NOT CONTINUE WITH THIS DRUG!
Another friend of mine with RA had tried Enbrel, Remicade and Orencia after methotrexate quit working for her…she had pain, was using a cane but still active and getting around and even coming to my yoga class. Her doctor suggested Rituxan when the others did nothing…and I warned her of the possible deadly side effects of these biologic drugs that might or might not work. She took her doctor’s advice and went on Rituxan. It affected her blood picture adversely right off the bat..she was really, really sick and went into Hospice in a couple months….was dead within three months of taking the drug. I was understandably upset that she chose to take that risk…but we all have to make those decisions thanks to this damn disease RA.
PLEASE, do not let anyone “guilt” you into staying on this very dangerous drug. Especially if you have not had any good results so far anyway.
Good luck and I hope to hear you told those doctors NO!
hi Kelly,
my heart goes out to you because I’m going through the same thing. I was told by my new rheumy (top rheumy in NYC for three years running) that I will very soon have “very poor quality of life” if something is not done. I’d never been on a biologic because of my propensity toward major infection. But now with my spine almost gone and six major joints having been or needing to be replaced…things are desperate. So I went on Enbrel…within three weeks I was hospitalized for two weeks with pneumonia and major asthma problems. I’m home now…back on Enbrel…and now I’m fairly certain I have a UTI also. 🙁 What to do? It’s the hardest question I’ve ever faced.
yes, difficult. I’ll pray we both know what to do.
Kelly… Go with your gut feeling on this one!
Wow, tough one. My Mum died of cancer just a few years ago and during the treatment process did a clinical trial on an experimental drug from Switzerland. The side effects were horrible and she wanted to ditch it, but they gave her the same line about “helping”. She decided to keep going with it and the drug is now approved in several countries and seems to help some cancers, but personally, I wished she’d opted for quality of life… however, your situation is different.. but a little the same. Whatever quality of life means to YOU, well, OPT for that, is my 2c. Because wasting a precious year on infections, no improvement and stalling the start of a potentially better treatment sounds like it isn’t your best quality of life.
Again, just my perspective and today when I go see my Rheum to probably start MTX or a biologic.. something more aggressive (because what I’m doing and am on, ain’t working), I’ll think of you and weight my choices carefully.
Chez
From what you have written, this trial isn’t about the efficacy of Rituxan, it is about faster administration of the drug. Infusion reactions are what is going to hurt this trial, not people dropping out due to side effects and/or lack of efficacy. I think you have done your part for humanity already!
I agree with everyone outraged that they would ask you to take one for the team! (It’s like the school district who wants you to keep your kids in school to raise the caliber of the student body…) No, you need to get rid of a serious infection. I was on Humira for 6 years, developed chronic cough, shortness of breath, and frequent infections. Doc took me off nearly a year ago. Having a right heart catheterization Thursday because now I’ve developed PAH (pulmonary arterial hypertension). I’m still hurting almost all the time, but can’t say it’s really worse than when I was on Humira. Hesitate to take more “poison” as nothing has made a dramatic difference. A drug has to make a dramatic difference, in my opinion, to warrant the serious side effects that come with taking it. You’re in my prayers.
Dear friends,
Last night when I wrote this blog post, I said I’d make this decision myself and based upon science and what seemed best for me.
And I’ve just been sent this study:
http://www.ncbi.nlm.nih.gov/pubmed/20131284
http://www.medscape.com/viewarticle/704637
Looks like there is a chance it will work according to this study. Maybe a better chance than if I tried another tnf as dr. tylenol suggested, which is my only other option until the JAK is approved. So because there is a chance for me, I will try it. I’ll also see the GP & take precautions about infection. If there is infection in the intervening 2 weeks (between infusions), I’ll have to decide from there.
Again, I wish we could have measured my B cells to inform my decision, but this decision is based upon what might possibly help me to improve which is almost beyond my dreams at this point.
I’ll post tomorrow if the wifi is working at the infusion room. Pray all goes well. Thanks!
Yes Kelly, know I will be thinking of you and praying hard too! (like Always). I will wear my RA warrior shirt too! Stay strong my dear brave friend. We all love you and want you to get positive results now! Big gentle hugs…
Kelly, Given your hesitation and the infections I was surprised by your decision but I guess I shouldn’t have been – you are very brave! And very determined to beat this disease. I hope that this does work for you the second time around. There is a risk, true, but we’ll all be rooting for you! Be well!
Will be crossing everything for you tomorrow.. Xx
Just say NO to Rituxin and YES to Kelly Young fidnimg treat,emit to help her. You are selfless. Time to be selfish, in a good way. I love you. Kim
Kelly, our prayers are with you, and our many, many crossed fingers and toes (for those who can do that with their fingers and toes!), and many, many good thoughts that we can all do from afar will be on your side and hoping for a positive outcome….
As the ad above this note says, “We fix it right. Right away.” Wow!
I think that ad being there, at this time when we are rooting for you, is a very good sign! The ad could have been for Toyotas or for Kleenex, but it wasn’t ….very eery if you ask me! So, someone or something is going to “fix it right” for you and “Right Away.” Hooray! Keep us updated!
Kelly
First of all, thank you for all that you do. I believe that great strides are being made every day toward greater understanding, and that it largely due to your efforts.
You have to do what is right for you when it comes to your treatments. RA is such an individual disease, and what works for one may not for another. I understand the importance of research, but I would not be willing to put research before my own well being.
I feel that RA patients are good targets for emotional manipulation. We are desperate for a cure, dependent upon the knowledge and mercy of the medical community, we try not to complain, try to be compliant. This is just another case of manipulation. If you fail, they fail. Just like anyone, doctors are going to respond more favorably to those who make them look good.
Thank you for all that you do for the RA community. This time, do what is right for Kelly.
I will be praying for you tomorrow.
Kelly
This is a decision that only you can make, and we will all support whatever you decide.
But you keep saying that we must advocate for OURSELVES, that we alone know what is going on inside our bodies. Now is the time to do what is best for YOU, humanity will not be harmed by just one person leaving this trial.
Best wishes
Barbara
Gentle hugs!!!!!
Kelly,
Just want you to know I will be praying for a positive outcome from this even though it scares the crap out of me. Please keep us updated.
Linda
You have to research and discuss, and weigh and weigh again…but ultimately have to go with your gut. I wish you only the best from deciding to go a second round. Hugs to you Kel.
Chelsea
PS, although i see their point to a degree, those responses by both docs are a bit disappointing. Especially if that’s all they had to say about it.
on my way out the door. It was all they said. & one was a rheumatol. I really believe they do not get it.
Regarding your Rituxan decision: You have already made your “contribution to humanity” by participating in the trial. Personally, I think asking someone (you!) to continue on the trial after experiencing a serious adverse event is irresponsible and unfair. YOUR health is more important than the convenience of the Rituxan trial manager. Every large study experiences a number of participants who “drop out”. These losses do not negate the usefulness of the trial. In this instance I hope you will make your well being your first concern. It is not the first concern of those connected with the Rituxan trial.
Maybe not continuing with the trial is what’s best for humanity if this drug I causing prolonged infections. Ultimately the decision is up to you and the only thing edging me toward continuing is the possibility of getting relief sooner in the future with avdifferent med/trial. Infection on top of RA for me is almost unbearable. Last winter while on mtx I had several infections (sinus, dental, strep, ect.). Having an infection on top of RA is pretty much the worse thing I can think of. Everything hurts so much worse when you have RA. I’m keeping you in my prayers. Good luck.
what an insightful idea. on my way out the door.
Dear, dear Kelly,
You are so dedicated to the process of finding treatment and cure for RA (RAD), and we love you for it!
That said…. I would pose these questions to you: Is it possible that the ongoing infection that you currently have is actually impacting the effectiveness of the Rituxen? In other words, your body is obviously going to try to mount an attack on the bladder infection, so could this infection be exacerbating your arthritis and masking the true effect of the Rituxen as well? Also, I don’t know the number of participants in the study, but maybe the clinical trial is still statistically significant without your participation.
On a personal note: Every infection I’ve ever had has resulted in an RA setback for me with an increase in both pain and fatigue. During antibiotic treatment my rheumatologist has me withhold my methotrexate. I take an antibiotic, and if it doesn’t work, I’m prescribed another antibiotic. The process has taken as long as 1-3 weeks. After I get the infection cleared, and I get back on my methotrexate(it can take a while for the methotrexate to regain therapeutic levels), my joints always feel improved.
Okay, we all give our opinions freely, here, so I’m saying it…. Dump the Rituxen.
With motherly affection,
Beth
Kelly,
Please be sure someone is watching your blood counts – especially as regards your immune system – as you continue with Rituxan.
I had a 2 infusions and the start of a 3rd (anaphalactic shock caused a quick end). The problems with infections led to testing that showed my immune system was pretty much toast. I realize that is part of how Rituxan works but after eight months of immunoglobulin infusions my immune system is not recovering. My physician says he has not encountered this before and is puzzled as to the best response.
As we try new drugs we encounter new problems. For my part, trying new drugs is a scary balancing act between getting them out to the patients quickly and really taking the time for testing for dosage, efficacy and side effects.
I pray all goes well for you and that the Rituxan gives you the relief you need. As you commented earlier – everyone is different and has different reactions.
Praying for a cure.
Kelly, the reason to continue Rituxan is if you think it still might work for you. These drugs are all way too toxic for anyone to ask you to continue for the greater good of the study. I have had a low white blood cell count in the past from Enbrel and Humira, and am very paranoid about the risks of infection. Rituxan scares me more than others because the effect on the immune system lasts so long (also worry about PML and transfusion reactions), and I haven’t had the nerve to try it yet. I am currently considering Actemra, and doing my usual agonizing over the risks and benefits – I do this with each new med. I’m so sorry you are in this position, and my thoughts are with you in making this extremely difficult decision.
Melinda
Kelly,
you are so brave! I love you and will be praying for you xo
I am literally SICK TO MY STOMACH that a Dr would say that to you ..or anyone …
thank you Jen. 2 doctors did say that w/in a couple of weeks while I was seeking their advice for my long term care decions. I’m glad it bothers you too.
Kelly..my thoughts and prayers are with you today, so many of us are willing this to work for you, I can understand why you are having the infusion, any chance of success however small is better than no chance at all..hugs. Please keep us posted.
thank you Barbara. Yes
Kelly, I’m humbled by your bravery. Sending prayers for this to work for you.
With regard to clinical trials – I was on a trial for Actemra. My research nurse told me all about the patients stopped by the clinicians because it was not working for them. No suggestion of doing it for humanity there.
xx
those r good nurses. a little sleepy but it’s going well so far.
I am thankful that you shared your struggle with this. It helps us to think ahead if something like this happens to us. Whatever your decision is it should be one that is best for you. We all have to carry our own load. You can’t help anyone if you are 6 foot under. You are a true warrior against this disease and wish you all the best with whatever you decide.
thank you Debra. I knew I didn’t have answers, but hoping sharing the process helps someone if even to bring awareness of our situations – I know I’m not the only one making these choices – most of us are.
Kelly: Oh my. Those of us with chronic diseases often have terrible choices to make. In this case, I don’t think there is any right or wrong decisions — just the best decision. As an aside, it appears that you need to be your own best advocate because no one else seems to have that role. Sending support and hugs your way.
thank you Carla. yes I agree.
I have heard of people who did not respond to the first Rituxan infusion, but saw improvements after the second or third. Not that I’m saying you should definitely do it, but it’s potentially another item for the ‘pro’ list. And while I’m on pros and cons – really? Go for it, Kelly, you might help humanity? After this many months of infection?? Sigh. Just… sigh.
That said, I’ve had stubborn infections with methotrexate only (in my case an everlasting sinus infection) and a friend of mine had a UTI for 6 months, but did not have RA or a suppressed immune system. So they happen. Cranberry capsules aren’t very effective, though. Drink a shot or two of pure cranberry juice (like Black Rive http://www.blackriverjuice.com/history/news.html) every day, either straight or dissolved in water. It helps both in case of UTI, but is also terrific for preventative purposes. I’ve had that recommended both by my naturopath and an NP who I trust.
I’ve been on Rituxan for over a year now and to be honest it has been a lifesaver. I am able to walk and to go to work every single day pain free. Yes I start feeling the pain again when it gets close to the time for the next treatment. I have had RA for over 20 years now and I’m only 42, I’ve tried everything out there. Before I upset anyone I understand that every person is different and our bodies react to all meds differently. Methotrexate was the worst drug for me- I’ve tried the pills and the shots but I was so sick I could hardly function.
I’ve had only two small reactions with the Rituxan treatment- I say small and to me they were to others they might not be- I had flu like symptoms for about 12 hrs and tightness in my chest for 24hrs but both went away.
Good Luck to you and I hope and Pray everything works out for you and everyone else that is fighting this horrible disease.