I have been Told I have vasculitis. I have five vasculitic ulcers on my left foot and the.pain of these is terrible. Trouble is my TVN nurses do not seen to know how to treat them. My consultant has told me to increase my steroids from 10mgs per day to 40mgs per day for two weeks. Whereas my other RA consultant wants me off of steroids altogether. I am waiting for funding for rixitux
But in the meantime I am in so much pain I can hardly walk so I could really do with some help. from someone in the group that maybe going through a similar complaint
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Chazzi
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Why not try increasing the pred for a few days? If it reduces the pain that is a gain, if it doesn't after a trial you can drop back to 10mg straight away with nothing lost, you don't need to taper after such a short period.
Some doctors are totally scared of pred - without reason. Used properly and carefully it is a lifesaver. We have a lot of people on my home forum who have been at way more than 40mg for months - and have recovered and got off pred and are well.
As regards the dressings for the ulcers by the TVN's, I had a similar problem with the treatment they were giving, until I suggested using an alginate dressing. This is an extract from seaweed and does contain iodine but in natural amounts. It has the effect of drying out the ulcers and is painless unlike the other dressings. It thus promotes healing of the ulcers. I would suggest that if you do use this that you dress and clean the ulcers daily, this is what I did and my ulcers healed completely within six months as opposed by the TVN's estimate of 18 months to two years. To relieve the inflammation I would consider maintaining the Prednisolone at a high level until symptoms start to subside. Then reduce in increments of 10mg per 28 days until you reach 5mg per day. After which you could reduce by ½ mg per day over 56 days period. But, this must be done in consultation with your RA consultants. Although it worked for me, each of us are different and whatever treatment you choose, even this one, may or not be appropriate for you hence for you to work closely with the consultants.
Thank you so much for the information about the alginate dressings.funny you have said about them as one of my nurses has just started putting the sorbsan silver ribbon on one of my legs and it seems to be having a good result already so fingers crossed. On the other foot with the vascular ulcers they are trying a new oil called lQD trouble is its hard to come by.
But lets see how it works. Thankyou again for your help as I am really fed up with this pain.
I’ve been told by my dermatologist I shave LCV, and by my Rheumatoligist that it could be ,” partially treated Vasculitis “ because I had just begun Rituximab when I had the large patch outbreak.
I was having very tiny ( tiny...) outbreaks prior to Rituximab.
( Rituximab was for extremely high RA factor , CIPD, History of severe thrombocytopenia, but really it was for severe progressive / Refractory anti phospholipid Syndrome with DVT’s every 8-10 weeks despite a Supra therapeutic INR.)
The Vasculitis outbreaks are still occurring, but not , “ florid” , and not necrotic. They will seep a little blood.
My Rheumatoligist is unclear on it. He drew blood again. Most all inflammation markers were somewhat elevated including the CRP. Only the RF was extremely high.
The migraines are the only diabolical issue.
The prednisone ( 120mg solumedrol IM or into IV cannula equivalent) has helped. It lasts about 3 weeks.
Now my Rheumatoligist is administering by mouth and I can’t tolerate it. Three days now and I can’t handle the GI side effects.
I see my GP tomorrow about getting solumedrol again. It calmed the brain inflammation down considerably. I had one outbreak on my upper thighs during the protection period of the injection. But I felt ok.
I’ve done very well with Rituximab as far as no adverse side effects. The trick is it must be administered very slowly. I can only tolerate 6 drips per ? I can’t remember now ... per ml? I can’t remember the formula off hand . Every single time they speed it up over that rate, I break out in hives. Not serious, just annoying!
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