This has been a while now and I still haven't figured it out. Since I started taking Revolade in February I had cracking joints, even my spine especially my neck area cracks, sometimes with almost every movement and loudly. I find this a bit concerning? The doctors don't know and it only says "joint pain" on the list of side effects, but my joints don't really hurt. Even as I'm just sitting here and writing "crack crack crack".... Does anybody have an idea whether this could be something bad?
Also been taking more prescription iron pills for my ferritin, I first thought it was lowering my counts, but now it doesn't look like it, they've just been up and down a bit as usually- 167-126-121-143-114-143-130-114-151 the last bi-weekly ones. Pretty good for only 25mg Revolade.
I'll start working again in August. It's in a different far away city. Hopefully I can find a doctor who's as good as the one I have now. He's really been listening and didn't try to force unnecessary treatments on me as others have. I hope I can handle work, but I saw many of you do.
And- this should probably be in the womens' section, but I'll just write an all in one post- my period is almost normal again. When I started Revolade I had been worried, because it stopped.
Thanks LMan, I'm also getting a bit less worried about the side effects. I'll probably move this month if it's possible to find an apartment in that area. And hopefully settle in in a couple... I'll update when something's new. I was at a different gp's today and he kept asking why I needed a referal for a hematologist. I first didn't understand the question at all, then I remembered it's actually possible to have itp and not need treatment. That made me a bit hopeful that that may be the case again sometime. And even if not I see I'm still lucky with this low dose.
167-126-121-143-114-143-130-114-151 the last bi-weekly ones. Pretty good for only 25mg Revolade.
Nice counts ImPatient.
Except for 167 and 151 that is about what I get out of 25mg. But unlike you, I don't respond to steroids/Dex. It is a bit rare, but those that respond to steroids/Dex can get off of ITP drugs after taking just Revolade/Promacta/Nplate for awhile. As I recall, that happened to user 'CindyAnn'. You can take a look through what kind of counts she was getting on 25mg by looking through her history. Closer to 200 maybe? pdsa.org/discussion-group/search.html?searchuser=cindyann&searchdate=all&order=dec&childforums=1&start=0
Hi Hal, that's encouraging. Well I've been in the 90s the last weeks, but it's not a huge difference to the counts before. Also saw in my notes that I already had the cracking sounds after the incident on NPlate where I had trouble breathing and chest pain.
I'm moving this month. I really like my current doctor and am a bit afraid of having a new one. But near my new place, there's a whole department of a well known hospital specializing in ITP and other immune blood disorders. So maybe they even find something that fixes it more quickly. And if not it's fine... I'm not doing too badly on Revolade...
I haven't thought about checking in much because I got a new job, and way more hours than agreed upon... Anyway, I'm at the immune hematology specialist's now. He said he'd even try getting off of Revolade. I said I don't want to experiment while I have a new job. My guess is I'll end up in my 20s or 10s and on Dexa again... The "bone cracking" starts to worry me again. It's almost every joint, hands, knees, spine. And especially my upper spine scares me it's cracking so loudly I'm afraid of turning my head. The new hematologist said he can't imagine it's Revolade, but I had this... actually since NPlate and really noticeable on Revolade. Gp said he can imagine that it can cause cracking sounds, because it also causes joint pain... this is driving me nuts. Especially since it's hard to get an appointment with the current job. Maybe I'll quit it again, I really only took it to be able to move anyway. And because I thought it's such a progressive free-spirited company, but of course those kinds are sometimes the most controlling ugh...
I also bought some fish today. I know I keep getting told being vegan didn't cause my ITP, but maybe I'll try to eat it and if I can, do it more often for a while see what happens. I'm taking b12 and iron, but maybe pills really aren't the same, especially after a long time (17 years vegan, more years vegetarian).
Lucky for us, Revolade/TPO-RA can make life return to normal.
I was so hoping they would talk about 'CAR-NK' technology as a ITP treatment at this years PDSA conference last weekend. But nothing.
Dumb question about the bone cracking. Does it feel like it is bone against bone? Or, is it more like no real pain like when one pop/cracks one of the bones in one's fingers? As I recall from high school biology class, isn't that sort of popping due to the tendons that attach muscle to bone slipping out of track with the knuckles?
Can't one get a lot of vitamin D from fish? IMHO, vitamin D is important for steroid responders.
But first to your questions: It was intense pain in literally every joint I know of, it sounded like something was breaking, and sometimes kind of "fizzy". Especially my spine. As mentioned my doctors said being vegan has nothing to do with it. One doctor (my gp who's also got some certificates related to hematology) said it can come from meds like NPlate and Promacta. The others said no.
Now I was so desperate lately, I bought a can of hand fished fair trade tuna. It stayed in my cupboard till one night I was really freaking out and just tried it. Just hours later the pain and cracking was a bit better. I thought maybe I'm just imagining it. Now, 7 tuna cans later (-and a few days, after not having had meat in over 20 years) I only have a bit pain, very slight cracking or fizzy sounds. Sometimes I even forget the pain for a bit, considering that I could barely sit straight for a half hour last week, that's a huge improvement. I'll keep observing this.
Online it says tuna and salmon help with arthritis and inflammation. Looks like it to me now too. However it also says veganism helps with inflammation, and that, in my case, has been complete bs. I have been vegan since 2003 and vegetarian a long time, and I eat healthy for the most part. I definitely ate the vegan foods recommended on those webpages daily, and I still had this issue.
You think it's vitamin d? Possible. My itp started in 2016 (not very noticeably until 2019)- after I moved away from a very sunny to a very rainy place (California to England). Sun has vitamin d, too yes? Maybe I don't have ITP but some decifiency?
Regarding the joint cracking- I thought it was maybe also the omega 3 acids... I have no idea, if I could be vegan again I'd prefer that, but right now I prefer being able to turn my head without it sounding like it's breaking.
Special immune hematologist tomorrow at the hospital, see what my blood is doing...
And some not so good. Apparently thrombos were 56000 at the end of July, and since I had quite a bit bruising lately I wouldn't be surprised if it was much lower now. My previous doctors always printed it out immediately for me, but the one I have now is specializing in immune hematology and definitely doesn't need to push me into unnecessary treatments for money. So I think it's a good idea to stay with him...
How low can you keep your thrombocytes without it getting dangerous in your experience? He sounded like it doesn't really matter. I know most say start treatment under 30, definitely under 10. Some of my previous doctors let me sign forms that I could die if I left the hospital. This one said it's nonsense, very rare.
I'm wondering why mine dropped after doing well on Revolade for a few months. Maybe I had too many minerals in my water? (But it was only like 12mg calcium or so). Or it's because I moved to a new place far away and started a new stressful job?
I'm also asking myself whether it's worth keeping the job. It can be fun and I feel I'm finally really doing something valuable for others, AND what I like. But it's at a school. The Corona measures in my city are really nonsense. There's close to no distance between me and students, classes mix in the hallways, one kid already had Corona in my school. One that I know of. Who knows maybe more... The main reason I have the job right now is because I want to save up money in case I get healthy enough to move back to California. But I could get by without the job, unemployment here is enough for rent, some pocket money and insurance.
How low can you keep your thrombocytes without it getting dangerous in your experience?
You are asking a question no one can really answer for you. Someone else's experience may not be your experience.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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