Utter exhaustion ..........

[guineapignot]

Good morning . My diagnosis is / was Cryogobulemic vasculitis in 2017. Having had all the treatments listed ( started on mycophenolate which damaged my lungs and kidneys posing more problems)and in nov 2020 completed 2 infusions of Rituximab..... I am in less pain in joints than I was .....but am a exhausted every day sleeping much of it as I feel Completely drained. My sleep is very disturbed too. Again this morning I have numbness in both lower legs .. headache and sore shoulders and right hip. After getting up this improves slightly ... but then the exhaustion sets in again . I am hugely bloated and very uncomfortable with that . My toes have just crossed over ( happens regularly) which is painful and my right leg is cramping . I have been on 5 mg of steroids for some time now. I am awaiting consultation again at hospital but seriously exhausted .... can anyone help I who has experienced anything similar !??

Please !!!! Thank you

[Investigator1]

Hi guineapignot. I have been on Rituximab now since my first dose 5 months ago and therefore didn’t know what to expect. I have shoulder pain now and then and a little numbness in fingers and toes but that has got a lot better. I also have abdominal pains from time to time. I have talked to my specialist quite a lot about this who I trust implicitly. She says it’s all about blood tests, if my liver function is ok she is happy because a lot of these symptoms can also be an indicator of Liver problems. Stick in there it will get better. Nick.

[guineapignot in reply to Investigator1]

Thank you so much for your kind and positive response.I will stick with it .....Again last night i had such a disturbed night and was up 6 times . I am stiff and sore in joints this morning and have taken my meds (Prednisolone...Hydroxychloroquine ..lanzoprazole ..Thyroxyn and CO CODAMOL......i feel better again in about 40 mins....and then about 10,00 am the overwhelming exhaustion sets in . Until this i was very active ......i have a call fro Rheum Cons today and hopefully i will hear more. Meatnime all good wishes to you. Thanks again and i hope you continue to benefit from your treatment .regards alan

[Investigator1 in reply to guineapignot]

That’s ok Mate, your medication isn’t or (wasn’t) dissimilar from my own, although like you apart from Rituximab I take 5mg of Pred and lanzoprazole. I like you try and stay active. What I do is when I feel fatigue creeping in I get on my bike or go for a walk then sometimes I treat myself with a nap in the afternoon. I know it’s difficult Alan but your time will come mate. Nick.

[Daytek]

HiI have Pan, diagnosed in nov 2019. In Dec 2020 I had Rituximab x2. Feel I’m getting stronger and am actually doing well on the exercise front. I’m cycling and jogging(short distances) I’ve reduced the Prednisolone to 5mgs which has taken months to do. I have a numbness/ tingling both legs below the knees. It has been suggested it may be due to the Prednisolone. Also left sided abdominal discomfort.

It’s nice to hear from someone with similar issues.

Catrin

[guineapignot in reply to Daytek]

Good Morning and thank you for your reply. I am pleased to hear that your treatment is working and you are doing well. Excercise and fresh air is so importatnt ,to us all, and thats what i find very hard taht i am unable to do the things that i enjoyed. I have a stong (as it can be ) excercise regime...but right now it has to be absolute minimal and sitting down. !!Iam certain that 3 yeras of steroids(as high often as 60 mgs a day.... has had a significant effect onmy body /organs.Also the bad reaction to some of the drugs (mycophenolate). Which problems symtoms are drug related and which are the disease..i find baffling . Hence looking for as much feedback as i can and i will share it all. Thank you again and all good wishes. Stay safe and well !! Happy Friday !!!!

alan

[guineapignot in reply to guineapignot]

Please excuse all the errors and typo,s....i could say its the disease /another symptom....but ist not !!! Its me lol

[Daytek in reply to guineapignot]

That’s true. I was unable to tolerate mycophenolate or Azathioprine which is why I was lucky enough to be offered the Rituximab. I’ve reduced the steroids from 60mg to 5mgs with several failed attempts. Like you I’m not sure when symptoms are a result of drug side effects or the disease. Take care. X

[Mooka]

I don’t know about your vasculitis but I have had the full course of rituximab and can tell you that it does take a while to kick in for some people. I am classed as in remission but I still have pins and needles in my arms and legs and pain in my calves. Hopefully your fatigue will improve with more rituximab. I can only suggest that you pace yourself. Steroids do cause some bloating and muscle weakness but should also help with the muscle pain. Unfortunately treating vasculitis is all trial and error. I hope you get to see your consultant soon and get some answers.

[guineapignot in reply to Mooka]

Thank you Mooka.I did get a call from my Rheum Consultant on Friday late on and Unfortunately THe Rituximab has not worked for me ..so have now an appointment next friday and will get MRI scan plus a host of other tests as there have been further complications . I hope your remission continues and you make good progress. Thanks again and Happy Easter .!!

[Mooka in reply to guineapignot]

I’m sorry that rituximab hasn’t worked for you and really hope they find the one that will work for you soon. Thank you happy Easter 🐣 to you too.

[Mooka]

vasculitis.org.uk/events/fa...

I have just seen this on the vasculitis website. A webinar this evening on fatigue and vasculitis that you may find helpful. 🤞

[guineapignot in reply to Mooka]

Thank you for this I will investigate and report back for anyone else to have a look at . Regards A