Hi everyone, I'm new here. I started on 90mcg of Peg. Interferon a month ago. No side effects. Last week they upped my dosage to 180mcg/weekly. Initially I was fine, but in the middle of the night I woke with excruciating leg pain/bone pain - like constant cramps in both legs. It lasted all night. This has gone on for 3 days now. I have a fairly high pain threshold but this pain has brought me to tears, and worse I don't sleep at night.
I've contacted my hematologist about it, but wanted to get an idea if this might be interferon related, or if this might be something else.
The pain is dull and mild during the day, completely tolerable. But at night - I want to crawl out of my skin.
Any thoughts?
Thanks!
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SharonIsHopeful
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Hi. You have my absolute sympathy. I'm on Ruxilitinib 20 x 2 each day. At night time the leg and foot pain and cramps is excrutiating. I can't remember the last time I had a nights sleep!. My feet and legs actually lock up and last night my feet actually cracked - much like some people can crack their fingers - except I can't do that. I walk so much at night trying to ease the pains. My haematologist suggested tonic water it being quinine water. I refused a muscle relaxant in December but am going to now ask for it. I wonder if anyone on Rux has suffered from this. Try the tonic water anything is worth a try. Good luck Janice
I take rux Janice but only occasionally have leg cramps maybe once a month. My deepest sympathies to anyone who suffers with leg cramps the pain is unbelievable. Mine certainly are no way as painful as you and Sharon. I was told tonic water was good for cramps too. Hope you get sorted.
Hi Janice, I drank some tonic water last night. I also have been making sure to drink a lot of water throughout the day. Not sure if it was the tonic water, hydrating, heating pad or sheer exhaustion that did it - but I'm glad I finally slept last night. My legs still felt very crampy the moment I laid down but the heating pad on my low back helped radiate heat to other parts and relax my muscles. I'm not sure what I'm going to do in the summer time but hopefully the issue will have subsided by then. Take care, Sharon
Hi Sharon. So glad it gave some small relief. Seeing other replies re: keeping hydrated. I always drink at least 2 litres of water each day and to make sure I do get my 2 litres I have a 2 litre bottle. I keep this at the side of my bed too. I'm known at work and at the hospital for being the one with the two litre bottle!! Of course the downside of this is constant running to the loo !!! Good luck. Janice
Thanks Janice. I actually went out and bought myself a 1.1L bottle. I made sure to get at least 2 L yesterday. The bottle definitely helps keeping me mindful of hydrating. The muscle and bone pain have gotten less and less noticeable during the day but at night it's still quite painful. I'm not sure at all why night time is so special - maybe that's when my mind is focused on it? I've found the heat pad to be the only thing that provides any real relief...well, enough to let me fall asleep anyway. I'm going to an acupuncturist Friday, because why not at this point. Hopefully that helps. Thanks again and good luck to you!
I know this is one year on but I'm interested to know how you are getting on with the bone and muscle pain. I have now been on Pegylated Interferon 45 mcg for 11 weeks and the effect on my platelets is fabulous. The side effects however are constant and include joint/bone and muscle pain, headaches, confusion, massive sweats, mad itching, tingling in my hands, sleeplessness or intermittent sleep and mood swings. Oh and I also Raynauds, which I had before anyway and it doesn't bother e that much. the blotchy legs and bumpy skin does though. I used to have great skin. It still hasn't negatively affected my gums, hair or nails, so I'm happy about those. I still don't feel as bad as I did on hydroxy, however. That was a near death experience!!!!!
Are you still on it and how is it affecting you now? I do hope you are feeling a lot better. Sending you love and hugs. Penelope
Hi there. So sorry. I just saw this response. Yes. I'm still taking Peg. Turns out the chemo. nurse read my hematologists order wrong - I was never supposed to be on that high a dose. Once I was returned to 90mcg, I felt so much better.
I have been on 90mcg every 3 weeks (until recently due to pregnancy and generally low platelets) for about two years now. It has controlled my counts very well, and I am very happy with the result.
The only pain or discomfort I feel now is an achy, flu like feeling about 24 hours after I dose, but I manage it with ibuprofen.
The worst side effect came about 6-7 months into taking Peg. when my hair just started falling out in the shower. Just massive clumps. I never went bald but it sure felt like I was! I've always had fine hair, but have had quite a bit of it. It got to the point where I had to go to my stylist and get extensions, just to maintain volume. My ponytail was so thin I barely needed a hairtie. Honestly, it was pretty devastating for me. No one noticed except me but to see such a drastic change in my hair composition was shocking.
The thinning and shedding slowed down about 6 months after, but I never went back to how much hair I had before - I just stopped losing it and some grew back. But I was willing to take it at that point!
The great thing about pregnancy is the hair hormones - all this estrogen it's doing wonders for my hair and nails! 😉 And I'm so nervous for when it all starts shedding postpartum.
I also agree with you about the mood. My moods definately took a tumble. I waited for about a year to see if it was just me coping with the diagnosis or if my moods are really different - and it seems to be Peg. related. I just haven't felt like myself since starting Peg, no matter how much positive thinking I do. I started seeing a therapist which had helped but I'm not where I used to be and it takes effort now for me to feel like the person I once was.
Sorry for the late response. I hope you're doing well and the pains and issues are resolved or resolving, or at least reduced. ❤️
No problem. I'm pleased you got it sorted. You're doing well not to have the aches and pains more than 24 hours after injecting. They never seem to go away for me.
I'm a bit worried you take Ibuprofen for your pain. I understood that is a no no with this condition. We're meant to use Paracetamol only, due to the side effects of the ibuprofen. I think it thins the blood too much but check it out. Maybe Maz can advise?
No. I try to stay away from pain meds my liver has to cope with enough right now
But they just titrated my dose down to 120mcg this week, and the leg/bone pain was minimal to non-existent. So it was definitely the interferon at that dose (180mcg). I will definitely have to work my way up, if I can ever work my way up.
Hi Sharon, I have ET and am on Hydroxy and aspirin. About 18 months ago I kept being woken up in the night with excruciating leg/bone pain in my left shin area. After a lot of research and asking I have self-diagnosed this to possibly be erythrombelalgia.
The main reason I found is that the symptoms matched that of the above condition. By chance I realised that when I was in pain, I would get up and walk around. This seemed to help somehow to the point where I could get back into bed and go to sleep. A few hours later the same would happen, and I would have to repeat the process, which doesn`t take long.To cut a long story short what the leg needs is to be cooled down, it appears that it is the heat generated by being under the duvet which triggers the pain. The cure is to sleep with cool sheets and when the pain starts I either get up or stick my let out of the duvet until the pain dies down - it always works. Sometimes just putting my leg on cooler parts of the sheets helps. Like you I have no bother at all with this in the daytime. Also other than a slight niggle occasionally, my left leg is not affected.
If you google the condition there is some information there. Again it is a rare condition and is loosely associated with mpn`s. I have tried paracetamol and pain relieving gels, all to no avail. Hope this helps. Regards Sue
Hi Sue, I looked up the condition. That doesn't describe what's going on with me as I don't experience any heat or redness at all. It's just massive cramping and pain. This condition sounds very uncomfortable though. I hope you are able to find some relief for it. Good luck, Sharon
Hi Sharon looking at the replies you have received its probably well worth trying some of the advice given to see if you can get relief. By the way with my condition, I don`t get the redness, either but I do get the heat which is why cooling the area helps so much and I am managing to control things that way and get some sleep. As we are all on different meds and have different mpns it does seem as though some of these side affects affect all of us at some time and over the 4 years I have been on this forum, the subject of leg pain has come up many times. Good luck Sharon, hope you get some relief soon. Regards Sue
Thanks Sue. You too! I'm finding the heat pad is the only thing that truly helps. I'm going to see an acupuncturist Friday - fingers crossed. Oh, and my hematologist lowered my dose (to 120mcg), so hopefully that helps. I was diagnosed at 37 (I'm now 39), and until last month I was on aspirin only. This interferon is really kicking my bum!
Hi Sharon - you obviously do not have erythrombelalgia if heat helps you, as that is the one thing that would make that condition worse as I mentioned what it needs is cooling down when the pain starts. Fortunately I am managing to control my pain for the time being, just hoping things don`t get any worse as there is no cure and nothing else seems to work to help it. Hope you get yours sorted soon Sharon. Good Luck - Sue
I have Myelofobrosis and have had it for 15 years. I am currently on Rux and Panabinostat trial. I get cramps occasionally which I put down to being dehydrated. Drinking plenty of water during the day and especially before going to bed really helps. Always have a bottle of water by my bed just in case. It certainly seems to help.
Hi fighter 50 I also am on this trial have been for 4 1/2 years. You're the only other person I've come across on this trial!!!. I was diagnosed MF 8 years ago in April and am 66. I don't go anywhere without my water bottle definitely feel the dehydration without it.
Have ytou tried coconut water for rehydration? Lidl do their own, which I find most palatable and it isn't as expensive as others. Naturis Cocnut water. It immediately makes me feel rehydrated. Really effective. x
I'm glad to see someone with MF and could tolerate for 15 years.
I've was PV patient since 2005, and this week I was diagnosed for MF, I feel so bad, spending the time with the kids as a goodbye.
Wherever I search in the internet, I see that MF life-expectancy is not more than 5 years at its best.
My hematologist said that I'm going to do bone marror transplantation as I'm 39 years old.
What really makes me astonished, is that once I moved to interferon leaving HU I started getting blasts in my blood. I've been on interferon for 4 months now but the spleen is greatly enlarged.
May I know on which treatment you went through throughout these 15 years?
I've suffered with this in the past but now take quinine tablets which are supplied by my GP. I'm currently on Ruxilitinib but had similar symptoms when I was on a drug trial a few years ago and took them then.
Somebody has mentioned tonic water which does contain quinine but probably not in the strength that you require.
Thanks Nick. I did actually drink some tonic water last night. Not sure if it was that that helped, or the combination of drinking a ton of water throughout the day and using heat pads but I was finally able to sleep last night. I will be investing in a good water bottle. I also plan on supplementing with magnesium for a bit to see if that helps. Thanks very much for your response.
Hi Jawas, thanks for your response. The issue was actually the level of dosage. They lowered my dose and the bone aches/leg pains have completely gone for the most part. I actually do have compression stockings and wear them often. I haven't recently. I'll gat back to that as my legs always feel better when I do. Take care and thanks again for your suggestions!
You poor thing, what you are going through is horrendous. I have heard about the tonic water trick, also try taking more potassium, a sure fire winner for leg cramps. Hope you get some relief real soon xx
Hi! They've actually gotten MUCH better now that my dosage has been lowered. I'm also hydrating all day (2-3 L). I should probably sign up for some yoga at some point too. Thanks again for your concern! Take care.
I have the cramps too. I think they come because when the blood cells are "killed" the !waste materials" create acid in your muscles-- like when smoking, drinking or eating too much sweets . There are a German mineral product named "Basica Compact" (from Protina) which really helps. What also helps is to drink half a glass of water with the juice of a half lemon every morning--well before you have breakfast (1/2 an hour).
Stretching helps (you surely know already).
I feel with you-- the side effects can be hard, but still I am of the opinion that Pegasys is the best of the different products. Its side effects can be "killing", but seemingly not as grave as they can by using other products.
Healthy eating helps (stay away from acid boosters, such as Port, redwine, beef and deer (any dark meat) and too much sugar ( white bread, pasta, rice--better look for whole meal and "unpolished" rice).
I'm not a health freak --Have taken Pegasys (every third week) for almost 3 years now, so I have tried stuff off We are here (DK) offered antidepressants, I advice patients to avoid taking it. You will lose all energy and eat too much. Better use your own imagination to fight the depressions the medicine causes. Think of them as nightmares--cause they are NOT real !! Good wind.
I hope that too. There is seemingly no total solution for the symptoms and side effects, but with high spirits, lust for fights and healthy living I think most of us get along pretty well. Have a great week
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