Severe night leg cramps

I was diagnosed with ITP in March. Tried the Prednisone, didn't work, tried the IVIG treatments, didn't work and am now doing Rituxan, which seems to be helping after two treatments. But, about 3-4 weeks ago, after my first IVIG treatment, I began having severe night cramps in my lower legs..calf muscle, shins, and even down the side and ankle. I mentioned it to the doctor, but never really got an answer. Has anyone else experienced this?

I get cramp and stiff and aches etc when platelets are dropping and dropping below 4 (english version). I think it is a symptom/sign of the dissorder rather than an effect of the medicine/treatment. As I get them before given medication and get other aches when platelets are rising again.
Somehow am able to live with it but not everyone can do so. Ask the family doctor to see if they can advise how you can deal with the cramps.

One thought: Prednisone can lower potassium, which can in turn cause leg cramping. Many of us have been through it. Talk to your doctor about having your potassium checked. Some people have found that drinking Gatorade and eating bananas helps.

Hello: This is interesting to me because several months ago, I woke up in the middle of the night in extreme pain with a charlie horse in my lower right leg. The muscle felt like it was just keeping on going and I could not get it to relax. This injured my leg muscle so much I could not walk right for 2 days. It went away and I forgot about it. But now I am wondering if this was another unrecognized sign of ITP. I have just been going back in my mind and I think I am recognizing things I really did not pay attention to and think the ITP has been going on much longer than I thought. Thanks for any thoughts!
/Traci

I used to get late-night charlie horses rarely, but since getting ITP, I get them more often and more severely. I'm glad you brought this up. I wonder if there is a correlation. I agree with the other post re potassium. I would also add that calcium is good for leg cramps in children, so I take a cal-mag-zinc supplement. I think it helps.

I was first diagnosed last October with ITP. Besides bruising and bleeding in mouth I had severe leg pain in both calves and shins. The pain would actually wake me up at night. My hematologist said that leg pain is not a symptom of ITP. Since I had been exercising quite a bit prior to being diagnosed I assumed this was the cause of the pain.

Paul.

Thanks guys! I had talked to my doctor about it, and my potassium was fine. He did say my calcium was a little low, so I started on some calcium-magnesium about two days ago, and actually think the cramps are a little lighter..hopefully! It's frustrating to have something happen to you and your doctor tell you it's not a symptom of your disorder or they just don't know what's causing it...glad to finally find a place like this to talk to others who experience the same things!

I was actually going to agree with Sandi... I get the leg cramps when I am on prednisone and was wondering how many of you were taking that on top of the other treatments you were having... I don't remember having leg cramps while or Rituxan or IVIg, but I definitely get the cramping in my hands and legs while I have been on prednisone... *shuddering* so painful.

Glad that you have discussed with your doctor... I pray that you continue to get relief.

It certainly is a sign for me though don't always get signs in the same order. In December I was already in hospital and the count was 7. Between 7 and 3 I had leg cramp that night it dropped. (How come it is always at night?)
This time I had cramp in my leg enough to put a cushing under one foot and that allowed me to go to sleep. I was on holiday at the time. Just 2 weeks ago.
On Sunday my count was 4. And was taken in and had stiff moments rather than cramp.
Am certain that for me it is a sign of ITP but not conclusive enough on its own merit as naturally other factors in life.
I also have a tendency to feel aches in my brests when the platelets are rising up. Haven't noticed this time though am sure they have risen. My instinct is pretty strong. This time I only had one little bruise on left knee, 5 petachie spots on my leg and one on my neck. That was it - and instinct. I rang up and my count was 4! ITP is very confusing if we think about it. We learn to trust ourselves in time.
HOpe this helps you learn a little bit more about ITP cramp/aches... Mine are definately related to ITP and not to the medication am 100% sure.

And my heamatology consultant would tell me to ring up if felt them at 'home' because I have a good working relationship with the team and know the condition well enough. Though when on holiday just assumed it was the travelling. Though I think deep down I knew because other signs had been appearing but chose to be 'hopeful' and enjoyed the holiday enough to go back in December, hoping my platelet count behave that week. The thing is to learn to recognise your own signs and chart them if that is how you like to do things. If you notice cramp and then after similar period of time, the platelets have dropped, keep informing the heamatology consultant and they will hopefully soon acknowledge it could be a real sign for you. I seem to be so lucky with my heamatology department..... that they have learned to trust me or is it that I have learned to trust me? Keep a track record so you can look back....

An orthopedist told me last month that I was probably getting leg cramps from being dehydrated. I saw him because while I was stretching, I tore the big muscle in my calf, the one that runs down to the ankle. When I asked how this could have happened, he said it was because I was probably cramping when I stretched, even though I wasn't aware of it. (Muscle tear is almost healed now, after a month.)

Absolutely!!! I had leg cramps so bad I ended up in the emergency room. It felt like hot knives were going down my hips all the way to my feet. I was on 80mgs pred. at the time, although the Dr. said that did not cause it. I know it did. A couple of months prior to this I had the same thing happen. I was only on 20mgs and the leg cramps werent quite as bad, but still extremely painful. This last go round I was up for 8 hours taking hot showers, pain meds, muscle relaxers and nothing helped until I went to the ER. The hooked me up to IV pain meds. My potassium was fine, surprisingly, but they said I was a little dehydrated. Go figure. After several hours I was able to go home. Terrible experience!

I also get leg cramps at night quite often but never though it could be to do with ITP...im going to see what counts are like at the times they happen.

Dehydration can cause muscle cramping. I am not believing that leg cramps are because of ITP - I suspect there may be other things going on.

Steroids can cause a high blood glucose level which causes us to wee a lot to get rid of the glucose, which causes dehydration, which causes muscle cramps. When I was on steroids I would get cramps in my feet if I stood still. It was absolutely excruciatingly painful.

But like Sandi, I'm not convinced that ITP itself causes cramps.

I was getting charley horses long before my ITP. Standing on my feet for long periods of time can cause them.

Since coming down with my second round of ITP, my leg cramps have been a lot worse. I swim a few times a week--and I also cramp up while swimming. My feet and legs will get a charlie horse cramp. I try to eat bananas (don't always feel like eating them, though). I also eat fat-free yogurt and strawberries (this is really good for you--mix it in the blender with some ice cubes). But, I also get them bad at night; could be that I need to drink more water like Sandy mentioned. Some days I do better than others; I try to drink just water and not fruit juices.

I am finding that my legs don't cramp or get charlie horses, but ache terribly. Almost arthritic feeling. From my hips, knees, feet, toes. I am off all meds. and still have this problem. It flares up more days than others and I am trying to track if it is when my counts are down/up to see if there is a correlation. My hands get it too but not as bad or frequent.

Hi aheimbach,
I know what you mean; I, too, get a lot more achy than before. I have been off all my meds. I had around 4-5 Decadron pulses (very strong steriods) and about 5 IVIG drips last year. My last pulse was around October. I think someone mentioned to me that the steriods stay in your system for at least 2 years. When I was at a medical conference for ITP in Los Angeles, one of the doctors even told me that the effect from steriods stay with you up to over 4 years.

So it's hard to say that what we feel is from the meds or the ITP; I do notice that when I am more tired than usual or stressed out (and not getting restful sleep), than the pain is a little more worse.

Thanks DeeDee for your reply. Sorry that you have the same problem, but I am glad there are other people that understand what living with ITP is like. So glad I found you guys!!!

Your welcome, aheimbach; that's why were all here--to share our experiences with ITP. It helps a lot to compare our experiences.

Prednisone can also cause arthritis, so maybe some of you are feeling the affects of that. Weather can also make a difference.

I know I do have some arthritis--and the Prednisone has probably made it worse. I was hit by a car when I was in my thirty's (broke my pelvis in three places); I have also had some bad accidents from horses through the years which have left me with some injuries. I am really, really careful now. Of course, when I was hit by the car there was really nothing I could have done to prevent it.

I know this isn't a very popular opinion, but prednisone seems to relieve my arthritis. My arthritis predates my ITP diagnosis and prednisone treatment. When I am on 10 mg of pred a day, I have much less joint pain. This makes sense to me since prednisone IS an anti-inflammatory--the only one I am allowed to take. I do not, of course, take the pred for the arthritis, but though I don't like the idea of being on 10-15 mg of pred/day, I am appreciative of what for me is a positive side-effect.

My safest arthritis treatment is ice--much easier to use in the warmer times of year. Regular water therapy helps me a lot too.

I think you're both right. At higher doses the prednisone acts as an anti-inflammatory and reduces pain. Doctors will even give people steroid shots for arthritis. However, as you drop the prenisone, you lose this effect. Also, if your adrenals don't start up right away, then you have more inflammation than you would have had you not taken the prednisone and I think that's why people who don't have arthritis can get aches and pains as they taper.

I don't think think this is very clear, but that's my theory.

Lily

I do think that our adrenal glands don't work the same after being on high doses of steriods (of whatever type). And, I think this can cause problems in how we feel.

Interesting conversation and I agree that taking steroids changes the way things work in our bodies. Is there a test to see if your adrenals are working the way they should?

I have found that doctors underestimate the impact that steroids have on both your emotions and your health. I have only come across one doctor that told me he would never take steroids and I have certainly seen a lot of doctors over the last 18 months.

Karen - it's a very popular opinion with me. I use Prednisone as an anti-inflammatory for Lupus myalgia and joint pain and have for seven years.

I think the adrenals can recover after one or two rounds of steroids, if tapered properly. But I do think they suffer if a person is on high dose, long term a few times (months) or on a lower dose long term (years).

Steroids used to be the only available treatment for rheumatoid arthritis. My mother-in-law that was, took it for that. She lost a lot of weight with the RA but had huge chipmunk cheeks due to the steroids. I didn't know much about it back then, not like I do now.

I also think that the prednisone isn't as bad as taking the Decadron. I'm not sure what else they use Decadron for--but I think I remember someone saying that it was also used to treat his Leukemia. I've noticed a lot of difference in how I feel after being on the Decadron pulses. I seemed to recover from the prednisone a lot faster.

Steroids are often used for different types of cancers. My Mom had lymphoma and was on 60 mg's of Prednisone for 6 months. Yuck.

Dex is a lot stronger than Prednisone. I wouldn't want to do that too often.