After 18 months in remission I have reason to suspect my MPA is biting back. At the moment I'm not sure so, I would welcome anyone else's experience of flares. A few days ago my left hand had a slight numbness and pin pricks in the finger ends. Those symptoms have now gone but the joints in my hand and wrist feel stiff and aching. This is all pretty similar to some of the symptoms before diagnosis. Other than feeling more tired then normal (and that's been going on a few week) there are no other symptoms of vascultis showing ie no night sweats for example. I have called in at my treatment hospital to get a set of blood tests today and I hoping to find out more. The main thing I am concerned about is an attack on my kidneys again. For those of you who have experienced flares is this typical?
Chris
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Chris-Bromsgrove
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A flare can be minor or major, but given you've felt tired and had possible nerve involvement, I would be straight in contact with my consultant.
My own experience of flares have both been unique, one brought a return of original nervous system symptoms, the other bought me a new internal bleed.
I remember you have had high ANCA scores, and sometimes, certainly my own experience, CRP and ESR markers can be slow to ramp up as the disease reactivates.
Given it concerns you enough to post here (and I know you're not one to react to every sniffle and twinge) I would suggest you contact your consultant; they might only bump your pred for a while...
Many thanks for your reply. I do try to keep an eye on myself these days but like you say I am not one to get paranoid about every little ache or pain. However this was so much like some of my earlier vasculitis symptoms I couldn't ignore it. The good news is (at least I am taking it that way) that most of my blood tests from yesterday are back and they are all normal (ESR, CRP and creatinine all OK). I will be seeing the consultant a week on Thursday and I hope she will just put this down to an odd rumble.
Hi Chris, I'm a fellow MPA patient although not had a flare up for 25 years. However, I remember the flares well when they came: Initially niggling but then severe joint pain that disappeared and moved to a new joint the next day, bloodshot eyes, and small red spots near joints. I keep an eye out for any of these as early signs. But as others say, get seen by your consultant as the many flares I had resulted in me finally needing a kidney transplant. Get an ANCA test to help diagnosis. Stop any flares ASAP. Rod
I don't know if this is a 'flare', or not, nor really do I care. The important thing is that you yourself are obviously worried, hence the 'post', and on this basis alone I'd firmly say 'see your consultant/doctors as soon as possible'!
I'm also sorry to hear that you have had kidney problems; I also have had a kidney transplant, last July, due to kidney damage caused by vasculitis. Though, in my case, the vasculitis was 'uncategorised', about five to seven overlapping stains apparently- never do things 'by halves' me! I have also had rashes and the like, am 'borderline' for Rheumatoid arthritis- no attacks recently mind (tempting fate I know) and have had cataracts 'done' that were caused by all the medications. The main sign that I am starting to 'flare' is redness in my left, the 'weaker' eye; I recently had a full eye examination, that revealed no problems- I'm happy to report.
Are you familiar with 'marker' testing? Apparently there are often, though not always, 'markers' in the blood that 'activate' when a 'flare' is either starting, or in progress. If a positive result, is found, then relevant medications can be prescribed/increased to try to minimise any damage to your system.
Please do let me, us all, know if 'they' find anything-please do have yourself checked Chris.
Many thanks for your reply. As you can see from my responses to Wellsie and Rod I am in the process of getting medical advice. My blood markers seem to be OK which is reassuring but it leaves me puzzled as what has been going on with my hand and foot. I'll to see what my consultant says next week.
Many thanks for your reply. The randomised "come and go" attacks on joints was just the same for me pre diagnosis. This was very much like what I experienced last week but on a smaller scale. Like you my kidneys took a bit of a bashing and your own experience emphasises the need to react quickly to a flare. However in this case (as you can see from my reply to Wellsie) it looks like a false alarm in this instance. Fingers crossed. Chris
I have not been in remission only diagnosed 9 months ago however my feet ankles wrists finger tips have for the last 7 days have hit a pain level nearing 9/10 , I or my doctors are able to control what feels like burning pain or 100s of broken bones in my feet . It took morphine 45 mins to kick in with other pain killers only to give me 1 1/2 hours of relief , just had scan for clots and X-rays awaiting results , any suggestions I have soaked my feet for 1/2 blocks but pain returns 15mins later
It sounds like your vasculitis is still very angry and not going into remission without a fight. I hope you get it sorted soon. This is the first time I have any sort of symptoms since going into remission, so I wasn't sure what it was going lead to. Fortunately it didn't lead to anything and dissapeared within a week and a half. Thankfully nothing to worry about. It is difficult to suggest anything regarding your pain. You are on a very strong painkiller already.
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