since coming off steroids, i have had severe phelbitis, and as i wrote a short while ago i am on morphine for it, my last inflamation test was 28. and assume this was because of the phelbitis inflammation. i have lots of pain again across my shoulders, and i am now unable to lift my legs to get into a car for instance, because of muscle pain, and walking is very difficult. my main problem is that i cannot sleep. i sleep for an hour then wake, doze then sleep an hour then wake, all night long.
the doctor is reluctant to put me back onto steroids because of the phelbitis and fluid retention problem.
Hello Margaret!
I saw your earlier post but didn't reply at the time. Sorry to hear your tale of misery. Is this your GP who is objecting to giving you steroids? What type of phlebitis have you got? I'm not going to make any comment except to give you this quote from a medical textbook with reference to ascending saphenous phlebitis:
\"The phlebitis itself is treated with non-steriodal anti-inflammatories until the symptoms subside. The use of steroids may be considered, apart from any underlying disease that may warrant steroid therapy, if the frequency and extent of recurrences suggest a need for longterm treatment. The response to steroids in these rare cases is generally good.\" from Pan Vascular Medicine: Integrated clinical management. Lanzer and Topol, 2002
i.e. this says that having phlebitis does not preclude the treatment of a pre-existing disease with steroids and steroids may be used to treat phlebitis.
I would go back to your doctor and ask for another opinion. Phlebitis is an inflammation, steroids are anti-inflammatories. There are cases of phlebitis being caused by steroids - but I think they are when the drug is being given intravenously. Steroids cause fluid retention - but so can PMR!
good luck
Eileen
Me again!
Just noticed another bit on the same page of the book about causes of phlebitis. Amongst the many causes of phlebitis are autoimmune disorders and vasculitis. PMR probably has an autoimmune origin and, as a related disorder to temporal arteritis, is certainly a form of vasculitis. Phlebitis is usually inflammation of veins, PMR probably of arteries, but there is nevertheless a common thread.
E
Hello Margaret E
I'm so sorry to hear that you are suffering from phlebitis and the resultant sleep problems. I was wondering if you take any garlic supplements as this is known to thin the blood and healp clear the arteries. I don't take the supplements but actually eat fresh garlic cloves in most meals such as casseroles, risottos, daily, or sometimes mashed and mixed up into my vegetables such as greens. If you are one of the people that can't bear garlic then perhaps you could try one of the supplements.
Do hope this help and my very best wishes.
MrsO
thanks for the comments. i think i am getting some results, as the dreadful pain is decreasing. doctor says the steroids made for an accumalation of fluid, and when i stopped taking steroids the phelbitis became inflammed, as the steroids although causing the excess fluid, was also keeping the inflammation at bay. if that makes sence to anyone,
so he was reluctant to give me more steroids to stop the inflammation, as that would casue more fluid to collect. one thing i have noticed since stopping the steroids is that my mobility has worsened quite a lot. one of the reasons i came off the steroids was to see how much my mobility was affected by the steroids. also the inflammation levels has increased from 14 to 28. this is in an effort to see if i had giant cell arteritis etc. as the consultant was not sure. my gp doctor says i have it though. so need more 'tests' etc. cheers margaret e.