Seen contradictory things as to whether weakness and shakes are down to the vasculitis or steroids. Diagnosed with GPA in August, on prednisolone and Mycophenolate. No organ issues, sinus pain and muscle loss in arms and legs. Was building up levels of exercise and regaining strength, but went backwards after reducing pred from 30mg to 25mg (started at 45mg). Loss of strength/stamina and legs feel on fire. Also return of sinus pain.
The sinus pain is gone after increasing pred again, but muscle problems persist. Anyone have experience of this? Raised it with rheumatologist, but he wasn't forthcoming and made no mention of it possibly being down to the steroids.
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I have experienced shakes and inability to walk plus weakness in arms hands and legs which I would say was the vasculitis as I had this prior to treatment and still have days when this happens.
I started with the shakes more or less as soon as I started on the high dose of Prednisolone. I hadn't had it previously. These gradually subsided as the dose was tapered. In my case I put it down to the Pred. Were you not initially put on a stronger immunosupressant such as Cyclophosphamide? That is typically used to get you into the remission stage before you go on a maintenance immunosuppressant eg Mycophenolate. It does sound at bit like you may not have gone into remission.
No, not had any other immunosuppressant. Was started on Mycophenolate and prednisolone at the same time, with the ago of the Mycophenolate taking over as the pred tapered off.
Don't think I've ever achieved remission, but not sure how I would know. Getting any clear idea from my rheumatologist of what my expectations should be has been fruitless so far.
Is your rheumatologist a specialist in vasculitis? If not I suggest you asked to be referred to one. A phone call to the vasculitis helpline may help you. As Chris Bromsgrove said it is usual to hit it harder to start with. In answer to your question I was told the muscle weakness in my thighs was due to the steroids.
He's a locum consultant in the clinic at Pembury hospital, so I would guess not a specialist in vasculitis. I did see a specialist at Medway to investigate GCA early on, but he ruled that out and somehow didn't move on to GPA. I'll give the helpline a go, thanks.
They may have started treatment less aggressively as I had no organ issues, just sinus and limbs. ENT had given me a six day course of pred at 25mg for my sinuses, which had been temporarily effective before I was hospitalised. I think they based their approach on that.
The first course of steroids gave me an immediate rebound in strength (went from crawling up stairs to walking), so hadn't associated them with muscle weakness. It's not great that I've been managing my pred dosage on my own, without having all the information!
That’s why they are called the devil’s tic tacs. Brilliant in what they do but for the side effects. You definitely need help to manage your steroids until you get to know them and the effect on yourself. I would definitely give the helpline a call if I was you. Personally I travel 60 miles to addenbrookes and have never regretted transferring my care there despite the long journeys. Good luck I hope you start to improve soon.
In the early days of diagnosis I used to get the shakes a lot , mine were worse on one side so I thought was the condition rather than predisolone. But I would say I have always found I need to taper steroids at a far far slower pace than I have been advised so do so now lower the dose at my own pace. When I dropped a dose too quickly in the past I would really suffer . It is though I know so difficult to attribute symptoms to side effects of medication or the condition itself.
We’re you never given induction medication such as cyclophosphamide or Rituximab? Muscle weakness can be due to the Vasculitis itself. It’s important you are seen by doctors who have experience, understanding and knowledge of Vasculitis
No, went straight on to Prednisolone and Mycophenolate.
The GPA definitely caused muscle weakness and I lost about 20 kg in 2 months before diagnosis, mostly muscle mass in arms and legs. Have put some back on since.
Thanks, John. I did have a chat with Zoi the other week about where to find specialist, which was very helpful. I have now been referred to Guy's. Just don't know how long that is going to take in the current circumstances.
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