severe knee joint pain after 1 month on steroids in ITP, is it normal?

My steroids dose started with 80 mg last month when diagnoised with almost nil platelets count ( started with excessive mensturation bleeding, petetchia and nose bleeding) and now reduced to 30 mg as count has stabilized to @2 lacs again since last two weeks. I got today severe knee joint problem, just untolerable, is it normal? how to deal with it? :(

Yesterday I was quiet active, had good morning walk, full active day t home and was feeling very positive, but in morning today, I felt very uneasy and throat pain and weakness. And in afternoon severe, untolerable knee joint pain, unmanageable with hot water bag, creep bandage any other home remedies :( I am confused whether its a side effect of steroids or tiring day yesterday???

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  • hi tarakeswani, i have experienced this most times when i either come of steroids or my does is reduced. my pharmisist advised me to take calcium along with vitamin D as it helps with absorbtion she also told me that i should ask for a bone mass test due to pain and long term use of steriods. take care

  • Thnx for reply. I am taking calcium along with steroids from begining, as i know steroids weaken our bones as side effect. Was worried bcazz of sudden acute pain after a month..

  • This is not normal, usually steroids taken at that dose gets rid of joint pain. I have Addison's Disease which caused my ITP, my platelet count went to 1. I had 10 weeks pain free, which was like a holiday. I think you need to see your GP, to find out what is wrong, make it clear you are still on steroids. Good luck and hope you feel better soon :)

  • Oh! Yeah, I do feel energetic all the time bcaz of steroids, but fact is my cholestrol is @550 (ldl) :( and gained 2 kgs in a month.. as hogging whole day with insensitive tastebuds and sleepless nights putting lot of stress. Trying to get in touch wih my hematologist.

    thnx!!

  • hi. when my steroids were reduced i experienced terrible joint pain in nearly all of my joints. ankkes knees arms even all my fingers. i too was concerned im completly off steroids now but my fingers still swell and hurt everymorning been off steroids nearly 6 months now. my knees still are tender but no where as severe as when it a started was diagnosed with itp in august. good luck

  • Thnx for reply

    omg! you know now i am not wrried abt my ITP or platelet counts..worried about life long side effects these steroids gonna cause.. really clueless... hw to deal with it. Any alternative of steroids?

  • When you are on a high dose of steroids it can adversely affect the function of your adrenal cortex. Which means you temporarily or sometimes permanently stop making cortisol. This causes pain in arms and legs and horrendous fatigue amongst other things. It is rare. If this doesn't improve over a few weeks you need to see a dr.

  • they are horible things to take. i had effects on them then off then. thought it would never end on top of this we have to deal with the uncertainty of itp. i tryed many treatments. ivg and rituxibab. neither worked. then they tried n plate (rompoplostin) and to my joy it has kept my platlets up ever since although they dont like to offer this as its costly but we were kind of stuck to water else to try. i now inject once a week at home. with no side effects and touch wood i have not relapsed for 4months. lowest ever count wsas 2. try not to stress there will be a better treatment out there for you. get off the horrible steroids . good luck i know how rough the itp road is

  • Your consultant will not want to keep you on steroids for long, they are seen as a temporary fix. When I was on 80mg of predisalone, I was going to bed at 11pm and getting up and starting my day at 3am. I was up and awake for 20 hrs a day. This led to my body being totally exhausted but my brain working overtime. I also could not stop eating and was putting on a stone every three weeks. My world turned upside down and I could not concentrate on anything. The three bad side effects of that high a dose of steroids are:- Hallucinations, feelings of suicide and complete loss of memory for short periods of time. I did not suffer from the first two but do get memory loss, which is frightening and unpleasant. I am off the steroids now and do not suffer any pain, but I did get leg pains when on them. The pain will pass but it took over a year for it to go. I am sitll getting the memory loss but have been told that will ease over time. Hope that helps. NickyD

  • only being diagnosed a month ago, this seems so overwhelming, but oh so very familiar. i am also up at 3 every morning. does the doctor ever offer anything to help with sleep?

  • I just called my hemo and he asked me to take crocin as pain reliever. :( Rompoplostin.. ok.. will chk with my hemo. Thnx a ton for info.

  • Thnx NickyD!! Me and my hubby are worried about side effects only from day one, i am taking steroids. all the confusions around, long diagnoisis and sleepless nights really king things hell. I am facing temp memory loss at times, though earlier i used boast about my memory :( I tried many times to think positive and try to keep in mind that this will pass soon... but thse side effects are just killing.. :(

  • any offer of sleep medication from your doctor?

  • thnx dizz! this info is really useful. atleast leading me to conclude something.. I just called my hemo and he asked to come for consultancy, if i get swelling too :( Soemtimes, I mean my hemo taking things too casually... my LDL is now @550, puffiness, plus weight gain...now joint problems.

  • Hello tarakeswani , when I was on steroids (4 times over a 4 year period from 2006 to 2010) my specialist also put me on a drug called Allendronic Acid ( one tablet, once per week) which was supposedly to help with the possible side effects of the Prenosolone/steroid of causing joint problems and weakening bones in the longer term. You may wish to ask your doctor/specialist about this. I also had Omeprazole like most other steroid users which helps with the problem of indigestion that steroids cause. Hope this helps but YES joint pains do come with steroid use so it is one of the recognised side effects.

  • Thnx Anthony! great help indeed! Allendronic acid!! will chk with hemo. Omez, I am taking already with steroids.

  • Sounds like your pain's coming direct from the steroids, but it's maybe worth knowing that arthritis is another autoimmune condition and if you have one autoimmune (eg ITP), you're at greater (statistical) risk of racking up some more. I'm up to four and intend to stop there, but that dies include arthritis - pains as you describe, except never so sudden and rarely so severe. The sudden onset makes me think you don't have arthritis, but it's just one more piece if info. Good luck.

  • Thnx LHine! Even I doubt same, I mean about arthritis, just confused hw to make it sure or whom to consult, already couple of docs have made me insane.. just avoiding meetn docs, even current hemo, as I think he is taking my case very casually :(

  • Nights are bad, I cant lie for long as knee joint pain grows like... :( Even in daytime, I am like.. not sure that can walk the distances, I want to, Pain comes any time and goes off anytime..

  • I have had ITP for about 7 years and I have bad knees and even had to get reconstructive knee surgery, I hardly ever get pain. But I don't take anything for ITP. My platelets are usually around 30,000

  • You dont take anything for ITP and still bad knees??? Actually, in my case, my bad knees are bcaz of steroids i am taking for ITP. Yday I had show to ortheo, he suspected wear and tear of knee minscule or may be onset of arthritis.. again a side effct of steroids :( I need to go for MRI

  • I had dodgy knees before the ITP, so it does happen! I'm just off to book physio as I managed to fall over before Christmas and spent a month in a knee brace, and I still have pain now. I found sleeping with a pillow under my knee helped as it keeps it flexed; strong paracetamol for the pain, and as I don't take anything for my ITP, I did take voltarol which I have for when my back locks up; and I can't walk. Those are for special occasions only, as I know I shouldn't take them.

    I bought a knee brace which was boned either side and was made out of the magic knicker material, so my knee felt supported and compressed, and not as painful.

  • Thnx scary teacher.. yeah, my ortho has prescribed me the same, paracetamol for pain and knee caps for support.. I cant stop my steroids abruptly.. but yes planning to taper the dose further if my report today will come normal. :)

  • Just to make you laugh - went for physio and have something the Belgian physio calls Young Girl's Knee (I'm 47!!). I have damaged cartilege from when I was a teenager, and falling over (and slipping patellas) have exacerbated this; plus my kneecap is in the wrong position, so I am strapped up for 48 hours, can't bend the knee (no cleaning the oven then), and that will hopefully start my kneecap moving to the right position. Makes putting your socks on interesting, and other necessary functions, when you have to keep your leg straight.

  • I have been on Prednisolone for 2 years (10 to 15mg). My experience with doctors is that they seem blind to the side effects. I had to make up some pseudo technical terms just to have the doctors listen to me: Hypertension, over sensitive, chronic persistent constipation! But soon into my treatment I also started taking Azathioprine(75 to 100 mg), whose side effects seem the opposite to Pred. With some balance re established I also started following TCM treatment, traditional chinese medicine, which is good where I am. TCM can be very good to complement allopathic treatments to treat with side effects. Maybe homeopathy can be of use if tarakeswani you are in India. Even drowsy formula antihistamines can help to get a good night's sleep. Btw, memory is directly linked to physical feedback. When at the subtle level all you feel is the even pulsing buzz of the steroids, then of course short term memory is not able to work properly. I am still on Pred and Aza, but I do not suffer side effects, or minimally til now. Of course I also question the longer term use of this drugs...

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