Comments on: Prednisone and Rheumatoid Arthritis

By: Liz

Liz — Sun, 27 Nov 2011 21:21:28 +0000

I’ve only been put on the Z-pak and the side-effect that I noticed was I got weepy and depressed while on it. Those went away when I was done though. Reading some of the posts here does cause me some concern for the future, since I was just diagnosed this past September. At that time I had to be on two consecutive doses to enable the pain and swelling to go down with the flare I was having. In the future…not sure what to expect.

By: Jane

Jane — Wed, 02 Nov 2011 13:27:03 +0000

I just recently found this site also, and I’m extremely impressed! I’ve found more valuable information on RA than I’ve ever been able to locate anywhere else. But the best part is all the input from people just like me who are battling this horrific disease. I don’t feel so alone! Thanks, Kelly!!

By: Meliann

Meliann — Wed, 02 Nov 2011 02:22:20 +0000

Cathy, thanks for sharing your history and I totally empathize. And I agree that Kelly is doing an awesome job with this site, which I have just recently discovered.

By: Kelly Young

Kelly Young — Mon, 31 Oct 2011 23:32:31 +0000

What a neat thing you did to be on that CME panel! Nothing is as good as hearing from “real” patients who know what the disease really is. Good luck with your knee surgeries!!

By: CathyRussell

CathyRussell — Mon, 31 Oct 2011 22:05:39 +0000

Let me add more to my post. In my 10 years with RA I have blown through Remicaid, Enbrel(2years)(constant sinus infections and knees hurt all the time but some relief from over RA pain),Humira( no effect at all), Cytoxin(caused fluid in my lungs—don’t ever get talked into it!!) Plaquenil(tire track hives all over my body),Rituxan ( best drug I used but effects have stopped after 4 years–did give me serious asthma and IBS and felt like I had been run over by a truck for about 3 weeks after my q 6 month infusions but still great relief from pain but not joint damage)and I just took my first dose of Actemra last week( stuffed up nose and muscle pain so far, also felt flu like for about 3 days)I am praying it will stop the joint damage. In these 10 years I have been on Arava( horrible diarrhea), methotrexate( I have tried to take it in various doses about 6 times and it flattens me each time—feels like horrible flu!!), Bextra( fantastic relief until my body recognized the sulfa in it and hives from top to bottom) and many other nasaids with increasing stomach issues. I am currently on ultracet, arthrotec, prevacid, and symbicort( RA lung with asthma). I have had 8 surgeries and 6 rheumatologists—finally have a great doctor!! I am waiting till after Christmas to have both of my knees replaced—the pain has become unbearable. My rheumatogist just talked me into going in front of a CME panel to discuss my history and I was terrified and think I did a funky job. I think RA Warrior is fantastic and am so happy that finally the real face of Rheumatoid arthritis is being shown. I just wished it had been here sooner to help guide me and others through this maze but Kelly you are a saint to take on this battle.

By: CathyRussell

CathyRussell — Mon, 31 Oct 2011 21:25:48 +0000

I was put on huge doses of prednisone in 2001 when I was first diagnosed with RA. I was told without it I was heading for a wheelchair. I have tapered to a dose of 9mgs but cannot get beyond that. Every time I try to taper my hammer toes on the left foot begin to get “taller”. I gained 35lbs. and now have osteoporosis and Cushing’s syndrome for side effects. I have been told I will be on prednisone for the rest of my life because my adrenal glands will probably never secrete enough cortisol again. My current rheumatologist is very much against the chronic use of steriods in RA but for me it is probably too late.

By: Meliann

Meliann — Mon, 31 Oct 2011 21:02:29 +0000

Jane, Rituxan scares me, but I may – may – be ready to consider it if Humira doesn’t work out. I had done fine on Enbrel for 5 or 6 years before it affected white blood cells, and on re-trial 2 months after stopping, same problem, and then Humira at that time, same thing. Orencia had no adverse effect. Cimzia, which is in the same family of TNF inhibitors, had no adverse effect (but no clinical benefit.) We are now going to re-try Humira, hoping that now 3 years later, it won’t affect the WBCs. My rheumatologist says all biologics can affect WBCs, but she says Orencia probably less than others. She told me she has seen another new one, Actemra, affect WBCs as well as liver and cholesterol. Sigh… These are hard decisions, keep us informed, and hope you find something that works!

By: Jane

Jane — Mon, 31 Oct 2011 13:26:48 +0000

Meliann, are you still considering Rituxan? I’ve heard it’s not as hard on the immune system and if you can handle the infusions it can be quite effective. You start with one infusion, then have another in two weeks, and then you don’t use it again for several months, or until you have a bad flare, which can be a year or more. I’m tempted but will need to wait until spring because I’m leaving to go south for the winter soon. In any case, I’m sure I’ll need prednisone to get me through the winter. Did all of the biologics you tried affect your white blood cells?

By: Meliann

Meliann — Sun, 30 Oct 2011 22:38:23 +0000

Just found this discussion. During my early years with RA (starting 13 years ago), I failed many drugs including Plaquenil, methotrexate, Arava, Remicade. I received periodic steroids, and then 5 mg daily of Prednisone. Tried Enbrel, it was great, but I still could not get off the Prednisone without major increase in symptoms.I had essentially no side effects at that dose. Then 3 years ago I had to go off Enbrel because of blood cell counts, and I have had a terrible time. During the past year, I re-tried Enbrel, had 6 months of Orencia, then just recently Cimzia, all with no effect or with adverse effects. Prednisone had been increased from 5 to 10 a year ago, then 15. Without it I couldn’t get out of bed or function. I have huge side effects on 15 mg, but now even with it, I have just had to go out on disability. I know some rheumatologists do not approve of long-term Prednisone, ever, but it was the only thing keeping me mobile.
I have friends, colleagues, and even fellow RA-ers who are judgmental about Prednisone; I would ask for their understanding that for me, it is the only thing that has kept me from being bed-ridden. I will be re-trying Humira soon, know there are a few others, but after this many medication failures, I do not know if I will ever be off Prednisone. Living with RA involves a lot of hard decisions and trade-offs….
Thanks for listening to me vent.

By: simplethings1000

simplethings1000 — Sat, 29 Oct 2011 17:38:42 +0000

I was recently taken off Humira (miracle drug for me) because of my white blood cells dropping. Until my rheumatologist and I decide what to try next I’m taking 5 mg of prednisone twice a day. The only side effect I seem to be experiencing so far is a burst of energy, which feels great. It isn’t affecting my appetite and I’m not snapping at people. It’s definitely helping the RA pain. I’ll be on the 10 mg daily dose of prednisone for two months until I see my doctor again. He’s suggesting I try Rituxan but I have to admit I’m quite scared of that one. On the other hand, new evidence is showing that using these new drugs can actually increase your chances of living a longer life because of reducing the inflammation. I’m all for that.

I didn’t use methotrexate with the Humira because I didn’t need it. Also, I had tried the mtx previously and I felt quite sick from it. That, and the fact that I couldn’t have my daily glass of red wine, made me give up the mtx. (I hope everyone is aware of the fact that you can’t use alcohol when on mtx. Mtx is already toxic to the liver without adding the alcohol.)

I’d really like to hear from people who are currently using Rituxan. Maybe someone can talk me into trying it?