Since an initial visit to a consultant in August to confirm Large Cell Vasculitis I have had no further contact apart from his summary letter which arrived over 4 weeks later. This detailed that i should reduce Pret by 10 mg per fortnight and arrange 2 weekly blood tests with my GP also that an urgent referral to ophthalmology was being arranged to see if my history of melanoma would prevent me taking MTX which he wanted to introduce as Pret was reduced. Concerned over the rate of reducing Steroids with nothing else in place I tried several ways of getting some guidance both through the Rheumatology Advice line and by writing to the Consultant direct. When I then started feeling so ill when going from 30mg to 20mg, I even tried my GP as, if I had followed the consultant’s plan, I would have already been down to 10mg and then nothing. However, I was told I had to discuss my care with my consultant. Frustrating as it seemed even the advice line couldn’t get a response from him until I ended up going to A&E and they got back to me to say he had advised that I should stay on 20mg until my follow up consultation - whenever that may be. At least they have changed something to make my blood test results accessible on the NHS App so I now have a way of monitoring for myself what is going on. In the meantime I had increased my dose to 25mg just to make life manageable and have been gradually scaling this down to 20mg by alternating days. This is such a contrast to last year when I came under a respiratory consultant for an autoimmune reaction, had monthly follow ups and was told I should only reduce Pret by 5 mg per month. It is now a surprise that, following my last blood test, I have been contacted by my GP surgery to say they are concerned that my Cholesterol levels have been rising - which I know can be a side effect of Pret. They have suggested I need to start taking a low dose of Atorvastatin (10mg) as soon as possible. This is disappointing as I have always led a health conscious life style particularly in respect of home cooked and healthy food options and with the amount of daily exercise I would normally do (somewhat reduced by my level of fatigue at the moment). From what I have read, I had always thought I would not want to take statins unless someone convinced me that my life depended on it but my GP feels that the increased risks of cardiac disease that comes with vasculitis together with the risks from the increasing cholesterol levels means I should immediately take up this recommendation. Needless to say there has been no follow up on this from the Rheumatology department so I am interested to hear of the experiences of any of you who have been in a similar situation.
Experience of Vasculitis and Statins - Vasculitis UK
Experience of Vasculitis and Statins
Do you mean you have large vessel vasculitis or giant cell arteritis - the terms seems to be mixed up somehow?
If so, there is a dedicated forum on HU for GCA and PMR - also part of the spectrum to which LVV belongs.
Yes sorry I became confused because at my diagnosis I was told I had GCA but in the summary letter from the consultant he stated it as Large Vessel Vasculitis. I don’t know if there is a difference or whether he isn’t clear what I have as apart from fatigue and clicking in my jaws (which for a short time were also painful) I haven’t had any of the other GCA symptoms usually listed
GCA tends to be the term used for cranial vasculitis - only affecting the head and neck for exampe. LVV involves the large arteries in the trunk and limbs and is termed extracranial GCA or LVV. And at the other end of the spectrum is PMR, polymyalgia rheumatica, which can exist in its own right or be part of the symptoms of both LVV and GCA.
Prof Christian Dejaco published a paper on this spectrum which has a nice image showing how they overlap and I'm trying to find a link for you - and not being very successful at the moment but I do know that a reply was posted to a post on the forum today showing it!
I'll keep looking for an easy link that doesn't go all round the houses ...
This post and my reply? If not, it’s a starter for 10..
healthunlocked.com/pmrgcauk...
It is the image I meant!
We did suggest looking at/contacting PMRGCAuk forum 3 months ago in first post
We did indeed.
Hi there. I am really fit as everybody on here knows me. I power walk 50km a week and do the gym work. Yet my Cholestrol was raised after finishing Pred even though I didn’t put much weight on. The Consultant suggested to my GP to put me onto statins. I thought oh blimey another tablet, already got my Rituximab and take BP meds. There is, I admit a certain stigma to taking them but I have to say they have been a game changer for me. My bloods are now regulated I don’t suffer with low cortisol or sodium that I was, I have now got my head round them. You’d be surprised how many really healthy slim people are on them. My Cholestrol was 7.2, it’s now 3.5 even on a low dose of avrostatin. I have been on a high fibre/low carb lifestyle for 7 years so it just shows you, I couldn’t have done any more so I just accepted it. Nick.
Thank you so much that is very encouraging. My concern was the possible side effects. Until nearly dying after being struck be an autoimmune reaction after my flu jab last year when a high dose of Pred brought about an immediate improvement , I’ve never been a pill taker except as a last resort when advised I need to.
Me neither Obscureclouds, but sometimes you just have to accept they are keeping you alive. I fully sympathise and understand your feelings, being someone who never had hardly any medication until I was 58 when I was diagnosed with Vasculitis suddenly taking 19 tablets a day came as a blow and I had some dark days I can tell you. But I am very lucky I have had very few side affects (apart from Rituximab at times). The other advantage for me is the statins have helped control my BP which is a family thing. My brother is 55 as fit as a fiddle but he went onto statins but it’s helped me and him enjoy a near normal life. You will do what’s right for you I am sure but I am always here for advice. Take care. Nick.
Thanks very helpful and thoughtful
It should be obvious to the GP that you need to stay on a dose of prednisolone that controls the symptoms of vasculitis and not wean lower than that level until other immunosuppressants are added.
Although Nick and I have a different type of autoimmune vasculititis (GPA) we both had a raised cholesterol after 2 years of prednisone (now slowly weaned and stopped) and have both been taking atorvastatin, I am on 40mg. It is not contraindicated with vasculitis and it may actually benefit us more than the cholesterol lowering effect - reading the scientific literature there could also be a beneficial effect on the protection of the vascular endothelium and relapse rate which has not been fully investigated as yet.
My only concern it when you start them -with so much going on at the moment adding a drug with some possible muscle pain (myalgic) side effects may confuse things further.
Thanks, helpful to know. Up til now my GP had been so good but I just couldn’t get through the “health navigator” (receptionist) to speak to a doctor when I needed to. Access to Consultant advice is very disappointing. Hence experience of others useful to know
Thanks useful to get your feedback GP and Consultant had been very good but sadly support has disappeared since I was transferred to Rheumatology having been diagnosed with GCA which I wasn’t convinced I have so now being described as Large Vessel Vasculitis. No temporal issues but I do experience blurry vision at times. Such a strange disease which seems to take many different forms
Sorry to hear that. It all sounds very frustrating and timewasting for you not to mention leaving you without a solution. Years ago I had a melanoma on my optic nerve which only a few eye hospitals could deal with so I was referred to Sheffield which was excellent as was the proton beam radiology I received at Clatterbridge After 5 years of 6 monthly follow ups it was decided I could have an alternate check up here in Bristol to save the travelling. I waited so long for this appointment it was nearly time for the Sheffield one so after that I stuck to the travelling. From what I hear Bristol Eye hospital is even worse these days so I’m not surprised that 3 months on an urgent appointment hasn’t been forthcoming. Our eyes are so precious so it is worrying that blurry eyes and worse can result from vasculitis especially as I have virtually no sight in my treated eye. I do hope you can soon get some relief from the symptoms you are suffering
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