Information & encouragement to fight RA
I have been diagnosed with moderate to severe RA, and no biologic shot worked for me (Humera, Enbrel, Cimzia). However, Xeljanz works for me. It will wear off if I miss a dose due to illness or forgetfulness.
I’m so glad they found something Jannette.
Oh I’m sorry you’re in such pain all the time but love all the wonderful small victories you achieved when you felt well. I have been on enbrel shots and now on Remicade infusions and they help me function and keep up with my busy boys. When it starts wearing off at the 5 week mark, pain start coming back but nothing as bad as yours. Remicade is my miracle drug and it really does help put my life in perspective, these little things I can do now are my small victories and things I celebrate now but completely took for granted before RA. Gentle hugs.
In February of 2013, I began to have serious joint pain in my knees and wrists. I lost 20 pounds in about six months. The pain continued to get worse. I wasn’t able do any physical tasks without great difficulty. I actually ended up in the emergency room. They gave me steroids and I felt much better. I was finally able to see a rheumatologist. He kept me on steroids and added sulfasalazine. Didn’t help me that much. I was still having to take Tylenol three times a day to cope with the pain. He then added methotrexate. Still was in pain and continued to have inflammation. In April 2014, I was put on Humira. It changed my life. I can now do everything I did before the RA and more — yoga, long hikes, running, etc. I sleep through the night. My labs results are good. He actually was able to take me off Humira for a few months and I had no flares. He did decide I should go back on because he was worried I might have joint erosion. Anyway, I take a shot of Humira about every three weeks. Keeping my finger crossed that I will continue to be flare free and pain free.
After 11 years I’m now on biologic infusions. The effects last about 2 1/2 weeks. I can get them every 4 weeks. The pain never completely leaves, but as you said, “I can function!” It is a glorious feeling. I was in so much pain and my strength/energy level was so low this month my husband had to carry me in to the office. I was a little embarrassed, but got over it pretty quickly. I can’t afford to be embarrassed. Steroid injections in my knees become necessary when my knees stop working. They help tremendously. Today, I’m very thankful for what we have that helps us. Tomorrow I may be fighting for more & better! Yes, I probably will. Thank you for fighting for all of us.
I’m not on steroids currently — but at last visit to truly gifted rheumatologist, she told me to go home and rest, that she’d never seen me looking so unwell. Between about a 20-hour nap and that day’s Remicade infusion, I had almost same improvement you experienced from steroids. It’s amazing to have a little flexibility and strength back!
I have just recently experienced this type of dramatic change with my new biolgics injection. I was doing well on an infusion for 2 1/2 years, but it lost its effectiveness so we switched, and for tge past year we tried med after med that just didn’t work. And the pain ibcreased and mobility decreased and depressed increased and daily activity decreased… Now i’m on a realtiveky newly FDA-approved injection. The dosage is five shots in five weeks and then once a month. After the second of five, i was walking easier, sleeping!, taking care of my own personal needs. I recognize what you mean by asking whoch part is the dream but i must be a cynic. People say, “You’re doibg so much better!” And i think i’m just waiting for the other shoe to drop. What i should do is take advantage of every day i am better, knowing/assuming it won’t last. Thanks for your blogs. I always feel encouraged!
I have never experienced what you are decsribing. I’ve had steroids and come close, but I can’t take steroids anymore due to the side effects (Weight gain, bone loss). The more weight I gain, the harder it is to do anything.
I am so happy you had a good week. I wish it would last longer! You look fab in the photo!!
It is so good to see a picture of you. You look beautiful.
So I get an infusion of rituxon every six months. I have Lupus as well as RAD. The infusion gives me about 4 or 5 months of energy that I do not usually have. It is as though a veil is lifted from my body. ( my energy level will never be what it once was, but after the infusion it is better) My pain level is also better. It is a long infusion( about 3/4 hours), but worth it to me! The effects are also cumulative so each infusion works on one another. It allows me to play with my grandchildren and get up and out of the house.
Kelly, I hope things have worked out with your court issues.
That shot works wonders. However when I told my doc after a week or two, it didn’t work anymore. He didn’t believe me and was quite vocal in telling me so.
That’s terrible, Nancy. What kind of shot was it?
Hi Kelly, ohhh gosh where do I start, firstly let me say that you look fabulous, as they say ” the invisible illness “. parts of your story are so familiar to me, especially the creaking of your joints.I developed RD over around 27 yes ago, have been on more medication than I can remember, for the past 13 years I have been struggling to find meds that would give me some relief. To cut a very long story short, and after 2 knees and a hip replacement plus gaining about 6stones due to steroid use I have finally found a biologica that is giving me a lot of relief and it is called RoActemera, the only down side is the constant chest and sinus infections…hope the meds keep working for you Kelly and all the best…Siobhan
I pray that you can get another shot before too long! I haven’t had much luck with any drug more than a couple of months. I’m on Cimiza
(just starting) now and I hope and pray it eases some of the pain.
I haven’t had much luck with any drug more than a couple of months. I’m on Cimiz
(just starting) now and I hope and pray it eases some of the pain.
Enbrel worked well for me until it failed. It took several years of trying other tnf-a drugs & etc. and living with daily oral steroids plus the occasional steroid shot (not to mention the narcotics!) before we found a new regimen that works. Unfortunately for me steroid shots last just over 24 hours. I usually come home and pass out from exhaustion after a a steroid shot since I don’t sleep well when I’m in such pain. After my last shot I slept for 15 hours. It was wonderful.
Now I take Rituxan every 4 months plus mtx and plaquenil. I’m off the pain meds and finally tapering the oral medrol.
I’m not in remission, but I can certainly do more than I can without the medication. It took a full year of rituxan infusions to get to this point of functionality. Without it I can’t do anything – I vividly remember 6 months ago when I couldn’t even stand to have a light blanket resting on me at night because the pressure on my hands, feet -everything! I am still in awe that a blanket made it hurt too much to sleep.
Thank you so much for sharing your story, Eva. I’m glad the meds are helping.
I’ve been taking Simponi injectable (every 4 weeks) for over 6 years after I was diagnosed with RA. Before my treatment I could barely walk, opening doors (twisting the knob) was so painful, I had to psyche myself into getting up and sitting down (counting to 3 several times), and the fatigue was overwhelming. I could only explain my pain as if someone took a baseball bat and hit every joint in my body. Two weeks after my first injection I felt a thousand times better and so far it hasn’t failed me.
Thank you for sharing Pam. The baseball bat sentence – I’ve said that a thousand times. It really is like all of my joints are beaten all night long. That seems like a good way to explain it.
I’m glad the Simponi shot helps you so much. I pray we find a medicine for each of us.
When I have the steroid jab I have to be so careful to not get carried away&try& do all the jobs that I have not been able to do for months or I can undo the good feeling in a day.I can relate with the feeling of going back into a dungeon.my extended family only see me when I have had a steroid jab because that’s the only time I can travel long distance in a car as a passenger
Humira,enbel and Orencia, methotrexate shots – none have worked. Waiting to start Scenes.
25 years ago, after taking gold for 9 months, and being barely able to move, slept max of 2 hrs nightly, had lost 25 lbs.,in crying pain daily was given my first dose of methotrexate. I was about to be fired from my job. Five days later I woke up as a totally new person able to move and somehow get dressed and go to work. Don’t think that I have smiled so much since. Talk about miracles.
Amazing story. Thank you for sharing, Sara.
Hi Actemra!!!! OMG can’t believe the difference. I have to take it with Aravia but that’s ok. Haven’t had a bad flare in months!
That’s wonderful, Diane.
Like Jannette, I’ve had this kind of outcome from oral tofacitanib (xeljanz). Before that it was mtx, plaquenil and zaldiar (for shingles neuralgia, thanks RD! ;). For me, while the joint pain has definitely been a thing, it’s been more the fatigue stopping me in my tracks — I liken it to a seagull flying into a window. It’s just — bam! lie down and do nothing right now, thankyouverymuch! I was close to giving up work, but 3 months into xeljanz and I feel a bit the way you describe — remembering what normal feels like, looking forward to doing things, ABLE to do things! I’m so grateful it seems to be working and have my fingers crossed it lasts for a while and I don’t get side tracked by any side effects, like some people I know. I hope your good effects continue, too. xx
I am so pleased you have had such excellent initial response to the biological treatment. Here in the UK I have been prescribed Methotrexate then Leflunomide both of which I could not tolerate, I even reacted badly to Levothyroxine when first prescribed and the only painkiller that works is one removed from general worldwide use which I have under licence. This has left me with receiving Depromedrone steroid injection intramuscularly up to 4 times a year.
Your symptoms are much the same as I hang out for another injection. Then last year for various reasons I queried my Levothyroxine dose as being inadequate and having read your blog on vitamin D started taking that. The increase in the Levothyroxine was 25% and what a difference that and the Vit D made. I was not hanging out for an injection until 5.5 months haf passed. Sometimes we do forget that other factors can have much bearing on those who have RD,much due to lack of knowledge. I have been having injections since 2002, I will not qualify for biologics here as I am seronegative and the calculations leave me short of the points.
Keep writing Kelly, you have helped me many times and getting through to the family is not easy but reading your blogs does the job.
Can you please explain being “short of points” to qualify for a biologic? Does being seronegative mean that you cannot get a biologic?
I am glad the Vitamin D helped. This is actually related to the RD. The disease process is destructive of bone tissue / bone building and low Vit D levels are common in PRD, although the exact process is not yet understood. Some people have improved symptoms with Vit D supplementation. If someone else reading needs it, here’s a link: http://rawarrior.com/rheumatoid-arthritis-news-vol-5-men-mortality-vitamin-d-research-new-ra-meds/
Just to be clear, I have never responded to a biological treatment. As stated in the article, I have only responded to steroids so far.
I will be starting Orencia again this week. Might sound simple but I am really allergic to it. I start off with 100 MG. of benadryl by IV then steroids. The Orencia has to be given over a 3-4 hour period because I have a hard time breathing otherwise. I get venous flares also. For the next few days I will be sick, really sick but then my life changes and I get approximately three weeks of improved life, keeps me going until about three days before the next is due!
Thank you for sharing your journey…it makes such a difference!
thank you for sharing too Patti. That’s really interesting. Orencia made me sick too, but it didn’t help so I quit after 6 months.
It’s so amazing you go through that to get relief.
I was diagnosed in mid 2015 and started Methotrexate. In six months I felt a lot better but my head just left me foggy. I was also couging continually for three mths but my primary doctor told me I had sinus problems. When I had an appt with my RA Doctor, he sent me to get a CT scan, then a pulmonary specialist saw scarrings on my lung. They immediately took me off MTX and put me on steroids. After about 6 weeks, I had so much pain, they put me on Rimicade infusions. Literally overnight, after the first Remicade infusion, I had no pain at all. Then I had an allergic reaction during my 3rd infusion and was taken off. Now I am on Simponi infusions and doing very well. While I may be just a little stiff in my fingers…I have no pain! But I will never forget that first Remicade infusion!
Amazing story Debbie!
Hey Kelly, I responded to humira for about 6 years and now on actemra it is working ok still pain and inflammation by not as bad as could be.I am on a couple other meds daily lufunamite,sulfasate,levetyroxine and about 5 others sorry on spelling but the best thing is a newer steroid that is time released Rayos. 5mg make life bareable still working 40 hours most weeks but sometimes the fatigue gets the best of me I am lucky I work from home so most days I fall in my chair and no one see me I talk on phone all day towards the 4 week period my voice starts to go. I wish you and your family well and all who read this blog. You are a great inspiration and thank u for the wonderful information and place to come and remember you are not alone.
Thank you Tina. I try to remember.
Monica, have you been retested after the seronegative result? I was negative at diagnoses and years later asked my family doc to add that test to my labs (rheumatologist saw no reason to recheck)–I was strongly positive. Could help your points system?
13 years diagnosed, and I feel like I am on the wheel of fortune of medicines. I recently was given the “miracle steroid shot” as professed by the nurse, that said I would feel instantly better all over the next day. Boy, was I disappointed when I felt no different. I’ve had multiple steroid shots in my right knee and one time it helped the right hip, one time I felt no relief, and the third time, my knee was instantly better (although starting to click again 6 months later). I am on my second injectible biologic, but find the disease pattern up and down with Orencia. I wonder if anyone has ever studied the varying degrees that our body’s react with the same medicines and found a correlation to the time of day or month or year to take them, for the optimal benefit?
You hit on an important problem. No i haven’t seen that it’s being studied.
I’ve been working on a way to measure disease activity in relation to treatment. This is the 1st post http://rawarrior.com/rheumatoid-arthritis-progression/
For your own situation, the differences could have been between differing levels of disease activity or different steriod drugs (and different amounts) in the shots.
I have also had varying responses.
Been on Orencia for 5 years. It changed my life! Finally found something that works for me
If I my ask, what new drug was it that worked for you?
as I replied above to Monica and mentioned in the first paragraph, “For me, only steroids make a difference.” Not a new drug, more of a last resort, but at least it’s something, so I can walk etc.
Kelly – do u find a steroid injection more effective than steroid pills? My Dr just prescribed Predisone while I’m waiting for Actemra. I took a steroid injection once but it didn’t do anything.
the systemic injection of methylprednisolone yes but it depends on doses of the shot or the pill if you are comparing. My doses are high & I don’t weigh much.
It also depends on what your injection was – I’ve had at least 4 different steroids in shots -so maybe the dose was too low or it was not the right steroid. hope that helps Catherine. also have u read this? http://rawarrior.com/steroid-injections-rheumatoid-arthritis-5-questions/
Thanks Kelly – will check it out.
online with Insurance they have denied Actemra. I am so upset…..
I have felt everything you have described and was in hospitals many times with morphine for relief and injections for swelling and my knee is so bad i have no cartilage and will need a replacement soon. It seems like a bad dream as how did I survive all those times of agonizing pain where you can not get off the potty. I have used a walker needed a wheelchair and currently just stopped using a cain. I can probably go on forever with all the similarities we have. I currently take inject methotrex that keeps getting upped with plaq twice day and started using humira. These have not worked well so take pain meds daily as of course cort for knee to walk and Depromedo as often as I can. How does one work I had a awful flareup last November and never came back with the strength to work. With all this being said I developed Bi lateral blood clots, theres no reason why its a side affect of R.A. I pray everyday and happy for the days I can walk. I love the R.A Warrior Support. Thank you!!!!!!