Muscle & joint stiffness-pedinisone withdrawl?

I have ITP, & initially was put on high doses of prednisone as a part of my treatment. I was weaned off of it, taking my last dose approximately 4-6 weeks ago. Since, I have developed stiffness in the joints of my fingers, which can be painful when I first wake up in the morning & tapers off to where it is hardly noticeable after I am up awhile. In addition, I have stiffness in my hips & upper legs when I get up from a sitting position; it makes me resemble a woman much older than my 57 years. ☹ The stiffness in my hips & legs is hardly noticeable when standing, unless I have to bend over to pick something up. At night I get an uncomfortable, not painful, feeling in my hips & legs when I go to bed, & I have a hard time getting to sleep because of it. Does anyone know if this could be from going off the prednisone? I am taking a couple of other drugs for my ITP; daily doses of cellcept & monthly rituxan infusions; I also take a couple of heart medications, but I thought I would check into the steroid first for possible side affects like these. Before all this, I had an ache here and a pain there, but not like this, and never in my hands & fingers; or if it was there, I didn't notice it . . .

This site is great!

Thanks so much!

Terry

What is the monthly rituximab supposed to do - I thought this was a once off treatment for four weeks only?

Yes, Prednisone can cause muscle and joint stiffness when tapering off and for a few weeks to months afterwards. It does get better.

I had joint pains with cellcept although it left my hips alone. Went for my elbows and knees and then shoulders. How long have you been on it?

I'd also wonder why you're on monthly rituxan. How many doses are you having?

Rituxan monthly maintenance is advisable for certain blood cancers and I wonder if when our doctors primarily treat cancer they just assume that is the way to go for ITP. There is no evidence or research I've ever seen to indicate it is a useful treatment for ITP.
Erica

I know some people in here have questioned the once a month Rituxin infusion I am receiving, before. My hematologist assures me that this treatment has a higher success rate. I have been told he is one of the best. I guess at some point I have to trust. And, I do admire doctors that "think out of the box", and are willing to step out away from comfortable place of following the "norm"; if "the science" is there, I'm ok with it. . . I would like to know if there is anyone else "out there" who is having or have had similar experiences.

Thanks for ur response!

Terry

Thanks, Sandi!

Ann,

I’ve been on 1000mg twice a day of cellcept and monthly rituxin infusions since about last July. My hematologist must feel having me on both cellcept, and rituxan for one year will give me a better chance of beating my ITP.

Did your stiffness go away?

Thanks for responding!

Terry

eklein,

That is a question I'm going to ask on Monday.

If anyone in here can help put together a list of ?'s I'll print everything off and take it with me.

Thanks so much,

Terry

Terry:

I had four Rituxan treatments that gave me a year of remission. The following year, I had one infusion and have been in remission for the last 7 years. You never know what will happen with ITP.

Don't you worry about the drugs doing more damage than ITP would? How do you know you wouldn't be in a long-term remission at this point already?

I'm glad you trust your doctor; that's great. You have to do what you think is best, but how do you know it's not overkill?

That's the problem with this disease, nobody, including the most brilliant of doctors seem to be able to figure it out . . . The ups and downs of the platelet counts every week have my emotions "yo yoing" as well. Is anyone ever cured, or is my body going to mess with me for the rest of my life? I wish I knew!

Thanks again, Sandi, and all of you who have taken the time to discuss this with me. . .

Terry

Ha - you said it - the body can mess with you! Mine started 14 years ago and hasn't stopped since. Good luck!

TerryOnTheMend wrote: Ann,

I’ve been on 1000mg twice a day of cellcept and monthly rituxin infusions since about last July. My hematologist must feel having me on both cellcept, and rituxan for one year will give me a better chance of beating my ITP.

Did your stiffness go away?

My pains started pretty well straight away with CellCept so it may not be that at all for you. And they went away when I came off it although I still get niggly pains in my elbows every now and then which I didn't get before. Along with knees and elbows, I had frozen shoulders, first one then the other, and plantar fasciitis and palmar fasciitis. Looking back it does sound like fun!

But then one particular effect of prednisolone hung around for over a year after withdrawal for me, and that was a tremor which would appear at the most inopportune times. So it could be the steroids also.

I've not seen anyone else here do monthly rituxan for over a year. That sounds like major overkill especially along with the CellCept. The CellCept alone kept my counts up while I was on it. It didn't push me into a remission though and my counts fell when I stopped taking it.

I may have found one of the reasons for my aches and pains. I got the results of my bone density test today and I was told I have osteoporosis. I read being on prednisone for more than 3 months can be a cause. Neither my sister nor I can recall a family history. There are some behaviors I am guilty of in my past, i.e. smoking for 14 years when I was young, but I quit in 1984 and I am 57 now. Is there anyone out there with similar experiences? I realize this isn’t a platelet issue but could be a result of part of the treatment and I am at a loss of what to expect. ☹

Terry

Regarding prednisone - how high a dose and for what duration were you on (You imply longer than three months...). Of course, as you point out, osteoporosis is a side effect. This is an example supporting the argument for a splenectomy - being asplenic may be healthier than bombarding the body with drugs... (I am writing from my own experience, having prednisone-induced diabetes).

Mark

Don't even get me started on that. Just speak to someone who has survived sepsis or a stroke due to splenectomy and see if they would say it was a healthier choice. Sometimes there are few healthy choices when it comes to treating a medical disorder.

I have seen too many people have a splenectomy and end up back on the same treatments they were trying to avoid. Double whammy. Splenectomy has its place, but I would not consider it a healthier choice.

Sandi

I know you (and many others here) feel strongly about the issue- and I highly respect your opinion. Admittedly I may not be completely objective, having my spleen removed back in Nov. But I wonder if our perception of all the relative risks are not askewed by the fact that drug side effects are slower and less dramatic than splenectomy side effects. I am thinking of the metaphorical frogs in the heated water, thinking that it ain't so bad in here....

That said, I completely follow your logic that a "failed splenectomy" results in a ITP diagnosis and the issues of being asplenic. The question is - is it worth the chance? and as I write this it occurs to me that some objective risk analysis could be done- there's a stack of papers waiting for me on the subject....

Terry, what are your platelet counts? How long ago were you diagnosed and put on the high doses of prednisone?

I know high doses--and I've heard even moderate doses of prednisone--can contribute to osteoporosis. I'm one of the lucky ones who, so far, just has osteopenia. However, I do have osteoarthritis in a lot of my joints (knees, back, fingers, for starters) and prednisone has given me some relief from those pains while I've been on doses of 8 mg/day and above.

Mark, some of us are asplenic AND still deal with other treatments because our splenectomies did not put us into remission.

Yes, Mark - you are right. It's all about benefit vs risk. I know there have been statistics regarding risk of death from bleeding compared to risk of death from splenectomy (infection), but I have not seen any studies regarding long term risks of other treatments. I've been there, I've done the treatments, so I'm not completely clueless. I have been on Prednisone non-stop for 7 years (not for ITP) so I totally get the risks of that.

And it's not just risk analysis, it has to be combined with benefit analysis. I think the splenectomy question is pretty complicated to analyze. And you have to factor in a person's tolerance for different risks and their lifestyle and importance of maintaining it (like being athletic). And how they feel when their counts are low (like, I feel totally crappy but some others feel fine).

I do feel strongly that we should each do the best analysis we can though and not go with a quick emotional decision.
Erica

edit : oh I see Sandi already said benefit versus risk - I totally agree, was just seconding that thought.

Iwas taking 70 mgs of prednisone when I was first diagnosed with ITP in April 2011. I began to taper in July to 60 and then slowly over the months until I was finally off the drugs in October. My platelets were jumping around in the 30's and 40's. I was taking a variety of things to support my body while taking the steroids to help with side effects.
Since I have been off the steroids I too have incredible joint pain in all of my body especially my knees, hands, fingers, neck. I have difficulty standing to up right. My doctor told me that the steriods suppress any pain related to arthritis and when you come off of it any arthritic symptoms become worse. I am hopeful that as time goes by and I continue to support my body to get it healthy the pain and discomfort may subside. I am planning to try and get myself some yoga or gi gong classes. Even once a day to start. It can be frustrating and scary when the body begins to do things we are not familiar with but I am going to continue to do what I can and I know I have been told it can take some time for the drugs to totally leave the system so I think this can also be a factor.

Hi Mark.. wanted to know if when you got off the prednisone did your diabetes go away?? I checked my sugar the other day and it was high 150.. the next day I tested in the morning before eating anything and it was 70.. so I have been worried about that.. I have sooo many other side effects from this med Im going crazy.. I also am tapering off the prednisone and have been horrible finger stiffness( which is not good Im a stylist and use my hands all day cutting hair) and leg cramps.. Im just wondering if I tapered to much this week.. I went from 70 mg to 50mg..( started at 140mg.. for 1 1/2weeks.. then went to 100 for a week, then 80 for a week, then 70 for a week.. now currently at 50mg..)Im just so worried about the side effects.. I want off this med.. I now have prednisone induced high blood pressure so started 2 different high blood pressure meds.. well guess what now my BP is to low, Im just so scared Im going to give my body a stroke r heart attack with all these changes my body is going through, and now with my suger levels being high sometimes is scaring me, my heart racing like it does is very scarey. my counts been pretty good for the last 2 1/2 weeks its been between 50-58,000.. but my hemo doc wants to start NPLATE because I want off the prednisone.. he feels I will drop when I continue to taper off.. but I want to wait and just monitor it.. but he is strongly for the injection.. I think I will just wait it out..

Mother, when I lowered my pred dose, all the symptoms of high blood pressure and high sugars went away too. I've also told my hema dr. that IF I have to go back on the pred, I will not do anything higher than 30mgs. I actually saw a Cardiologist when I had the racing heart! He assured me that once I lowered my pred, I would be fine and I was. Why are you on two blood pressure meds?

I didn't treat unless my count was under 20, so if you're at 50-58, you should be able to monitor your counts. Just my opinion as I'm not a doctor. Remember, it's your body and you need to do what you think is best for you.

Take a deep breath and relax, you'll be fine! Good luck.

Hi MG

Well, I took my last prednisone pill this morning! Prednisone contributed to a diabetes diagnosis and this past Fall, with very high doses I experienced a crippling insomnia. But other than that, for years and years, I tolerated it pretty well. I always had on the low side of normal blood pressure (only time it started to get high was when I tried cyclosporine to get off the pred.) To be honest, during past periods of high doses, I kinda enjoyed the extra energy.

I am paying the toll with the taper, though. For months now I feel extremely fatigued and getting in and out of chairs, I feel like an old man, hip and knee-sore. This week was a little better. I started a 30 minute evening walk this week. I figure I’ll wait til July 4th and see how I feel then!

To answer your question, my Dr. didn't want to check my diabetes status until I was off prednisone for several weeks, so I have an appointment in 2 weeks to start that. However, have been on low pred doses for about 4-6 weeks now. During that period, for diabetes, I continue to take metformin 2x day and inject a small dose of slow-acting insulin in the evening – and my morning blood sugar is around 100. So that's a healthy level but it doesn't seem like the diabetes is going away with the prednisone. I imagine that in the absence of diabetes, with the diabetes drugs, I would experience low blood sugar. But we’ll see.

It sounds like if you need Nplate, you will probably feel better with that regimen than you have on prednisone.

Good luck!
M

Cindy.. thanks that makes me feel alot better knowing it will hopefully go away.. I really dont know why they put me on 2.. they r both low doses.. one is the beta blocker and one is lisinapril HTZ (water pill) .. Im cutting back on the beta blocker to just 1 a day instead of 2 to try and regulate it back to normal.. but who knows.. I just started the BP med this week after having the high BP for a month now.. which really didnt make since to me... they knew it was medicine induced but really didnt want to start me on anything... but I requested something because I got scared having it that long.. but now that Im tapering off I may not need the BP med.. Im monitoring it very close.. I also feel like a old lady now.. my muscles and joints hurt so bad.. I have a horrible headache.. and have lost all my energy and feel very slugish and fatigue... I also noticed Im getting some shortness of breath when I do anything?? is that a side effect also?? but I dont know if thats because I have a cold and my nose is stopped up??? I still have the racing heart though.. its like I cant relax... Im really frustrated with all this and hope when I taper all the way off my body goes back to normal and I stay at a safe range... I hope I dont get any long term side effects.. do u think its possible?? I started pred on Feb 10 and was at 140mg for a week... then been tapering 20 mg every week?? I was suppost to be at 60 this week but I jumped to 50mg.. I want off this med ASAP.. this week is when I started feeling bad so now Im thinking maybe I shouldnt of went to 50.. who knows.. I only hope this gets better.. thanks

Goo:

I had all of those side effects during the taper too. Yes, shortness of breath was part of it. You'll need to watch the taper and not go too fast. I know you want off of it, but rushing will only make the withdrawal worse.

Mother,

I was on the pred from /04 when I was first diagnosed to /10 when I did the Rituxan, (at different doses of course!)

It really does get better!

MG

When you wrote

"I have a horrible headache.. and have lost all my energy and feel very slugish and fatigue... I also noticed Im getting some shortness of breath when I do anything?? is that a side effect also?? but I dont know if thats because I have a cold and my nose is stopped up??? "

It occurred to me that these are also symptoms (at least for me) of Spring allergies. One good side to taking pred is that my spring allergies were suppressed for years and years. Before ITP, they were so bad that twice (over 20 yrs) I was briefly hospitalized for asthma attacks. So now, pred - free for first Spring in many years, I have to deal with really bad allergies. - headaches, sluggish (on top of the taper), shortness of breath and and stuffed up.

I don't know if any of this applies to yourself....