Hi all. I have GPA. I wondered if anyone has experienced tingling in their feet with this. I've suffered headaches over the last few months mainly in the sinus/tempol area but more recently at the base of my skull and down my neck shoulder area. Severe at times. My lower legs feel weak too and getting cramp type pains in calf area. I stopped Mychophenolate in January and just on Prednisolone 5mg.
Any info would be helpful
Yes, I used to get this. Have GPA too. Someone recommended body shop peppermint foot lotion. I found it helped. I don't suffer from this now, however, maybe since the specialist started me on Septrin along with methotrexate. However, these cannot be taken together. So Septrin on Monday, Tuesday and Wednesday and methotrexate on Friday. Hope this helps.
Hi Marcrstq, I will try the peppermint foot lotion. Anything which might help with this weird sensation is worth a go. I have an appointment at the vasculitis clinic in a couple of weeks so I will see what they say. Reassuringly my GP today said my reflexes ok. Glad yours has now resolved.
Best wishes
Hi Ludo, hopefully you have been monitored more closely by your medical team since coming of Mycophenolate. I am surprised it has been done that way around. I would have thought it would have been preferable to get you off pred first. I have MPA. I am now off Pred but remain on 2 X 1 gram of Mycophenolate. Coming off maintenance drugs is of course down to individual circumstances but I would have aword with your doctor about the new symptoms. Chris
Hi Chris they tried to get me off Prenisolone first but after a stranachren blood test I was found to have adrenal insufficiency due to 12 years of steriod use.
I saw my GP today who said my reflexes were ok so he's not concerned. My legs do feel odd though so I will mention it at Birmingham when I next go.
Good of you to reply. Thanks
I am idiopathic, but share a lot of symtoms with vasculitis patients, along with Psoriatic Arthritis and fibromyalgia. I have had very bad tingling in my hands and feet when the idiopathic thing has been active, and has often turned into severe nerve pin. Upping the prednisone has calmed it down as well as increasing the gabapentine that I take to prevent just that.
My sinuses have been a mess since I was a baby, and the base of skull, neck shoulders, pain/spasms (rocks) in those areas also has happened in reaction to the sinus problems sinceI was a child, and recently I was told that this is fibromyalgia, which often comes hand in hand with autoimmunes, but who knows. Two advil/motoring 200mg and to regular sudafed are the only thing that helps with that for me. I know your pain.
Pain not pin. Motrin not motoring. Oy the spellchecker.
Hi Ludo, I also have GPA. I've had tingling in my feet (and hands) for years - I mention it at clinic periodically but have not had anything done specifically for it. I think it depends on how I'm feeling, tiredness etc - I also feel like I have weak wobbly legs when I'm tired on unwell. Am just on pred as medication at the moment. Sorry I can't be more helpful but at least we both now know it must be a "thing" with GPA!
Thanks Traxer, that's reassuring. Sounds just like my symptoms. I was worried I might be develping peripheral neuropathy. My GP says reflexes ok so I will just mention at clinic like you have.
Thanks again
I agree with what Chris has advised. Any new symptoms or reoccurring symptoms should always be investigated. John took MMF for 9 years and was able to reduce the prednisolone very slowly to zero while taking MMF. But he reduced the prednisolone first before reducing the MMF. He has been prednisolone free for over 4 years now. My husband John has had GPA for over 16 years now.
Wow. The professor Harpers team at QE Birmingham said I have to stay on Prednisolone for
Sorry sent too soon. Meant to say I was told to stay on5mg Prednisolone for life. I have to say I was really shocked when they just stopped rather than tapered my Mychophenolate. Did that happen with John.? I was on 1gram a day and had been for a few years having gone down from 2gram. They stopped it after I had an eye then a chest infection. I had been in remission mostly for some time.
I see them again in 2 weeks so will discuss where we go from here. Would like to come off Pred. Maybe nows not the right time. I am concerned the worsening headaches are due to my sinuses not the myalgia conditions they are suggesting especially as an increase in Pred to 40mg didn't work. The pain is behind the eyes and Temple area mostly and painkillers are not effective. I aired my concern to the GP I saw yesterday but he just said quite curtly that if Birmingham suspected that they would have treated me for it! That put me in my place.
Many thanks for your reply Suzy. It's given me food for thought,
Hi I have the same symptoms , but it's more like cramp in the calf muscles , it eased off when I came off asathoiprine and pred. But then they raised candersatin and it seems to have come back , feel tired too
Hi Peter, I have been getting cramp in my calf muscle too. Just wish it would all go away. I'm tired too. Having days where it's a struggle to do anything. Difficult when your working.
Glad yours has been resolved.
Thanks for replying. Best wishes
I still have some minor pains in my left foot. Feels almost like a sprained ankle/foot at times.
Do you ever get Retuxin Infusions? If not you might wanna look into that with your treating physician.
HiLoueJa, no I haven't had Retuxin. So thanks. I see my consultant in 2 weeks and will discuss it with them
The Retuxin Infusions, Cyclophosphamide and Prednisone are the main drugs for fighting off this disease and putting it into remission. I was almost dead and placed on ventilators and kidney dialysis for eight weeks in the hospital. I'm much better now thanks to these miracle drugs. Without doubt they save my life and maybe even my kidneys for now.
I am undiagnosed yet, but rheumy thinks I might have EGPA (Churg - Strauss). I've got many autoimmune disorders, one of which is Addison's disease, or autoimmune adrenal insufficiency. The amount of pred you are taking is basically only covering the adrenal insufficiency and not giving you any "extra" steroid to cover the vasculitis issues. I use a pump (diabetic pump) to infuse solu-cortef in over the 24 hours for the Addison's disease and then take additional prednisone orally for my lupus and possible vasculitis issues. Is your endo in touch with your rheumy?
Ive always been seen by the Endocrine Nurse Specialist. My vasculitis consultant tried to change me from prednisolone to Hydrocortisone but I became very unwell. I have tried to communicate with the endocrine nurse following a stranchen test a couple of months as I havent had the results. I will discuss with the vasculitis team when I see them in 2 weeks. Many thanks for your reply. Best wishes
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