Since coming off steroids I am having... - ITP Support Assoc...
Since coming off steroids I am having problems walking. I get pains in my legs and feet - has anyone else had these side effects?
I did not expeience those symptoms Nicky but I did get awful headaches for quite a while after coming off steroids (about 3 months of headaches which my specialist suggested had nothing to do with steroid withdrawal but I cannot see how it could have been anyhthing else).
I get the occassional headache but it is very unusual. It seems to me that we all get different symptoms that could possibly be related to ITP. But because they are so diverse none can be proven to be caused by ITP - it is all very frustrating.
Hi Nicky,
I am also at the end of a long tapering off prednisolone,a treatment that started about a year ago at 60 mg per day for 2weeks.Yes I can tdentify with those leg pains ( or are they due to the CellCept? ) but thankfully no headaches so far.The best discussion I have seen on effects of withrawal from this steroid is on the more active American PDSA.org Discussion Groups Forum. Plenty of comments on this topic there.
I hope this is useful for you. Kered
I will look at the American PDSA thanks. What is CellCept?
Hio Nicky,
CellCept is one commercial name (commonly used) for mycophenolate morfetil or abbreviated to MMF. It is a powerful immuno -suppressive drug used to prevent rejection of some organ transplants but now used by several haematologists to treat ITP with often good results as in my case. It is often very slow to " kick in" again as in my case. Of course the immune system is supressed and so care is needed and the Dr will give advice on that, but there is no need to hide from normal life, just be cautious. I have had no problems but do use sun protection out-doors when the UV light is low moderate to high . Kered
Hi kered - thanks for that - I will raise it with my consultant on Monday when I see him. Take care. Nicky
NickyD,
I am attributing the muscle and joint pain I'm currently in, to coming off steroids after around 15 months.
80mg a day initially, gradually tapering to 5mg a day for the last few months, then tapered to 5mg on alternate days for a week before stopping.
Felt awful for a month after stopping the steroids.
The muscle and joint pain has been getting steadily worse since coming off them 3 months ago, and I'm slowly losing weight.
Off to see a physio (gp referral) tomorrow to see if there's anything I can do to to lessen the pains.
I've also found that my extremities - hands, feet, nose - are getting cold for no apparent reason.
Any headaches I get are fairly minor compared to post ivig or anti-d treatments.
Owen
Hi Owen. My steroid regime is very similar to the one you were on. From 80mg to alternate days of 5mg and then none. I have been off steroids for five weeks. I like to do exercises each day but have not felt up to it for the last five weeks and that has made me feel guilty and lazy. I have put on a lot of weight from he steroids but have not had the motivation or inclination to do anything about losing weight. This is not normally how I am but I have just not felt well enough to start losing the excess weight. I feel the cold anyway and always have done so no changes there. Let me know what the GP says tomorrow about the pains. I only get the pains when I stand up for more than about ten mins. My job is very sedentary so I am lucky in that respecet. Nicky
I had major joint pains during and after withdrawing from prednisolone - very common, I think. It does go away eventually, but took more than 6 months for me both times. Of course, it would be nice if we could take anti-inflammatory painkillers like ibuprofen, but we can't, so just have to find other painkillers to get through it ...
Hi Rachael - WOW six months...... That is a lot longer than I was hoping it to be. Mind you with ITP you cant afford to be too hasty to get anything done or anything sorted. Everything seems to take an age. You say you had pains both times - how long were you on steroids? Nicky
I think I had quite extreme reactions with my joints, seem to be worse than most so hopefully yours will resolve sooner. I think it's supposed to be a couple of months max, but like everything else associated with ITP, we're all different! My pred dose (both times) was 75mg for 4 weeks, then tapering over 3 months. The joints affected were different both times though - the pain was worst where I'd had sports injuries in the year leading up to the treatment, so hips were bad the first time, but shoulders and elbows the second time ...
The consultant I saw on Monday said she may put me on 5mg or even 10mg daily together with Romiplostim to see if they can stabilise my count. I dont want to have any steroids if I can help it. My sleep is disrupted at 10mg and my appetite is enhanced. Did you put on a lot of weight when you were on the 75mg? I put on a lot and have not had the energy or inclination to take it off. Perhaps that is not helping the pains in my legs and feet? But as you say, we are all so different.
I was unusual - I lost 1.5 stone in 4 weeks the first time (totally lost my appetite and only slept about 30 mins a night - was totally wired and bouncing around like some kind of freakish Duracell bunny on maybe 200 calories a day), and 0.5 stone the second time (ate pretty normally and minimal insomnia). I did get major moon face plus a belly roll of fat the second time round, they took a few weeks to go once I tapered off.
I understand the sleepless nights. I would go to bed a midnight and get up at 2am not having slept and that went on week after week. Your body cries out for sleep but you end up being a walking zombie. I just ate and ate. Now I need the energy back to get rid of the surplus weight. I am sure it will come back but the sooner it does the better. Working when in a zombie state was very diffcult.
Hi Nicky
I have not been on any steroids for years but am having trouble with walking and my right foot at the moment so it may not be anything to do with the drugs but may be attributed to our condition that has not been acknowledged.
I have had the same problem. My Haemotologist said that due to the steroids, my body salts are all out of alignment, and the most likely culprit for the pain is low potassium. I'm going to have my levels checked when I go back next, but I have noticed that since I started eating more potassium rich foods I do feel better. Hope this helps you as well!
Hi Hollica,
I have read about the low potassium levels when coming off prednisolone. So I have been eating 3 bananas a day for the past 2 months (over kill?) to help with the potassium inbalance in an attempt to ease with the withdrawal problems.Any other suggestions for potassium-rich foods would be welome.
I will buy bananas today. I had one yesterday and the day before but may now see about putting them in my diet on a more regular basis. Do you have your potassium levels checked regularly?
The quick answer is not regularly, But I have been told that my sugar levels are now returning to normal ,androgens on the high side due to the predisolone,iodine is now in the normal range. A low potassium has not been mentioned and I have no calcium problem. Normally only the platlets,red blood cells,white blood cells, haemoglobin levels ,and associated factors are measured regularly and fuctions for kidneys and liver.
My liver ALT enzyme shot up from a normal 30 to over 1000 so I had to have an ultrasound and come off the Romiplostim. They were checking for a bleed in my liver and abdomen but luckily none was found. I have been to Tesco since we last emailed and have bought some bananas. My consultant checks all my other levels and they seem to be norma.
For potassium rich foods: You can use a low-salt alternative, the sodium is replaced with potassium. Also a glass of orange juice, or about 10 dried apricots have nearly the same amount of potassium as a banana, so that should help add a bit of variety. This link helped me avoid bananas, as I just don't care for them. algaecal.com/potassium-rich...
I haven't had my levels checked at all, as my platelets are holding steady since coming off the steroids. They have only run a CBC for a few months now, so I will be asking for a full work up after 6 months on the prednisolone.
Thanks for that - I will get some apricots in as well. Nicky
Thanks from me also Hollica. I also use the low salt alternative and orange juice rich in vitaminC,but didn't know about the dried apricots--- some variety at last ! Kered
It's been a while since I had a dose of steroids but when I first had them for my relapse, I was on 80mg for a while and I remember knee cramps at night and insomnia, whilst on the high dose but I cant remember pains after coming off them.
Yes I too am having problems walking. Pains in my hips, knees and what I would describe as "tired" legs. They ache so much that I went to my G.P yesterday and he is sending me for Xray to check for osteoarthritis. But now, obviously this is due to my coming off prednisolone. Thank goodness for this website I say.
Mags
You raise another aspect of long term steroid use mags4743 in that one of the side effects is osteoperosis. I (like most steroid users I would imagine) was prescribed Allendronic Acid with my Prednisolone to hopefully negate the impact of the steroid on my bones. I also had Omeprazole (again standard ) to complete the cocktail. I remember that my dosage of Allendronic Acid was 70mg per week, one tablet to be taken with a very large glass of water. Then the agony of it waiting to go down as it took ages. I also remember being under strict instructions not to lay down or eat for at least an hour after taking it as it might not go down properly. Oh the memories come flooding back.
Pineapple's are also high i Pottasium 
Pred's mess everything up but they are cheap, work quick for a little while.
Ya, even my brother got those symptoms since he was 5 years old. HE is now living with all that pain for past 18 years. We have never analysed the characteristics of the pain. He is so strong headed and manages everything except for studies.
I stopped taking steroids 4 weeks ago and every night my lower legs and feet ache. I also get bad cramp on the same areas. I've also had a pretty much constant headache that sometimes gets so bad it has me in tears and have started getting nose bleeds too
Weaning down slowly. Ended up in hospital after tapering by 5mgs from 30 mgs.palpitation, rapid heart rate. Tremors, headache,pins and needles around mouth, pains in various joints, hot flushes and then feeling cold.very frightening.down to 8mgs now for three weeks, 7.5mgs for one week then try for 7 mgs.three weeks, see how it goes but still get various withdrawal symptoms every time reduce for about 10 days,all the above but not as severe, plus disturbed sleep patten. Go to bed tired 10.30pm. Soon as head hits pillow, hyper till about 3am, no fun but used to it now.have to get off prednisolone as soon as I safely can for my own sanity! Not forgetting the moon face with hampster cheeks!,
I used to have about two or three ours disturbed sleep a night for weeks on end. It was impossible to relax properly and I could not function well. I was constantly chronically fatigued. I was emotional all the time and said what i thought without thinking. Always aggressive. Not fun to be with. But I am off them now and life is SO much better. Hang on in there.
Yes I forgot the mood swings and aggression I experienced in the beginnning.felt my head in one place and body in another!!!I. I was soooooo so rude to a friend of many years, uncalled for and totally unacceptable the way I spoke to her. I apologised and she understood.but one of the side effects of this drug.aghhhhhhh!
I got very adept at saying sorry. I too bit the head off a good friend. I got my sister to explain why I was like that and then I offered profuse apologies explaining that I could easily do it again! Glad those days are over.
NickyD have you any idea how long one has to be off steroids before can take ibrobrufen please? I have calculated I will not be free of them till May next year , that is if all goes according to plan, and I must have something to look forwards to . Saddo I am. But after the way my head etc has been maggled the last few months with side effects, willing to clutch at anything.just need to feel "normal" again and pain free. Many thanks
Hi you will never be able to take iboprofen if you have ITP. The only pain killer you can have ever is paracetamol - sorry. Nicky
Thank you x
That also means no cold remedies like Lemsip, Beechams Powders etc. You cant have anything to boost the immune system, please be very careful what you take. Paracetamol is fine. NickyD
Thank you NickydD for your help x
Yes. I do have that symptom currently the pain is in my right foot in the middle of my arch when I am standing on it. I could hardly walk when the doctor discovered my platelets were at 20. I was told to start steroids and like a miracle all that pain went away. Two weeks after my 4 doses of Decadron, the pain has returned. Thanks everyone for your comments about potasium as the problem.
Because I am now considered to be a chronic ITP patient I am now being scheduled for the Rituxan infusion treatment. Being a diabetic with a not so good kidney condition I am a little nervous about that treatment and the side effects.
nickyd how did u go on with this been of 5mg for 2 years now me feet are going cold at ends
Hi Minka My symptoms have pretty much all gone now regarding pains in my feet but i am left with debilitating memory loss and foggy thinking. My brain is like cotton wool and however hard i try i cant think straight. I have shed many tears but it does not make it any better. How are things with you?
hi just wondering if anyone else has had pain in toes and heels after coming off steroids (8 weeks worth) and if so please tell me does it eventually go away or will i now need foot surgerty or have to live this with this forever?
i had pains in my legs especially my knees, but it does go, eventually.
Hi, yes I am exactly the same at the moment, dreadful joint pain, fatigue, the pain in my feet after I have sat for a while is awful, I've had weight gain, since being off my steroids my breathing has got worse, I suffer from severe asthma. I have been on steroids for the last 6 years continuously, finally got off them about a week ago, had to have 1mg tab as pain too much. Not sure how long these symptoms go on for before it clears up? Hope you are soon feeling better and out of pain ☺
Hi there, yes I am now out of pain, thank goodness. I used to elevate my feet in bed using half a dozen pillow but that didnt help. I got memory loss from the over use of steroids and still suffer from it. I used to be an avid knitter but could not remember how to knit. Still cant follow a pattern, very upsetting. However, i have no pain for which i am grateful. Take care and i hope the pain will ease for you. Nicky
Hiya all,
I had a liver transplant 7 years ago and God bless the NHS and organ donors I owe them my life.
My health recently has been very good so the docs decided to take me off prednisolone from 10 mg to 5 five over 2 months then 2.5mgs every alternate day for two weeks then stopping altogether which was about 4 weeks ago. Well to begin with I felt awful pains in most of my bones and muscles but slowly this got better. Also fever like symtoms in the first few days. However today the heels of my feet are killing me I've tried all sorts of exercise stretching etc to no avail. I am not a quitter and the nurse has told me to persevere with this. The only medication I take today is 2 x500mg of mycophenolate one morning and one evening which is brilliant. My bloods are excellent.
Has anyone else had foot heel pain after stopping steroid use and how long do the symptoms go on for. I had taken prednisolone for 7 years as an imnusuppressant.
I look forward to hearing your views.
Best Wishes Peter.
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