hi all , a very frustrating nurse visit yesterday after over 3 years on preds and methotrexate for 9 months they are now saying after a excruciating headache back in November and a X-ray of me neck I have facet arthropathy and that’s what’s been causing all my pain absolute nonsense
So I said let’s stop the methotrexate right away and if that’s the case It should be a breeze to get of the preds oh no keep on all the meds but why If that can be treated with ibuprofen , I honestly have no words I have pain in my feet pain behind my knee and terrible new pain in my groin but that’s normal it’s time for a new direction but what do I do in the meantime with all this medicine?
any advice would be so appreciated x
Visit to the Rheumatologist PMR not the culprit 
Second visit to Rheumatologist 
Beyond frustrating visit to rheumatologist 
Any Thoughts on Rheumatologist Visit #1?
Visit to rheumatologist
Not saying it isn't but if you are too young for PMR/GCA, you are a bit young for facet arthropathy to be blamed for it ALL.
I think a new take on it would be a good idea.
hi , definitely need another rheumatologist now , with facet arthropathy are you in pain all the time I’ve just read about it and it’s saying back and spine pain which I don’t have, when I get the headache it’s not one that a ibuprofen would take away and I am violently sick with it . I’m so sick of not getting answers .
Where are you?
in Glasgow
Hmm - adds to the problem doesn't it. Have you asked PMRGCAScotland for advice about recommended private rheumies? Since you don't have the choice of who with NHS referral do you?
The headaches don't sound typical of GCA though - maybe a neurologist?
Are you sure headaches aren’t migraines? GCA headaches don’t usually make you nauseous - mine certainly didn’t in the months before diagnosis -and it’s not often mentioned on here. Although Ibruprofen not helping could indicate GCA…
It’s all a bit of a muddle isn’t it?
Hope you soon get a credible answer.
I don’t think it’s a migraine it’s a pain that starts at base of my neck and gets progressively worse over days the only thing that help is when I up my prednisolone which they are not happy about so I have not to up them again .
It’s on the drop of pred I took the last headache I was trying to drop to 31/2 .
everyone is different but i used to get throw up migraines, so bad that when I threw up, i felt worse, not better. Nothing helped. Many trips to er, husband almost carried me, for morphine (I don’t think they use that anymore). Had injections, physical therapy, massages, etc, A pain doc finally said they were myofascial migraines, had me start using lidocaine pain patches, worked well. Eventually after more years, they kind of went away although sometimes I still feel one coming on and use a pain patch that does the trick.
When I used to get migraines at school the nurse forced me to drink Sal volatile which made me sick.
I’m not prone to migraines never have been so it’s very strange
I have spinal stenosis, inflammatory arthritis and PMR, I also have all over foot pain. I am taking prednisolone and Methotrexate, having changed from tablets to injections a week ago. Last night when I laid my head on the pillow I had a bad pain in my neck going up into my head. I haven’t had this before and I’m wondering if it’s a side effect of my second injection on Tuesday. So difficult to deal with these ever changing symptoms/side effects. I understand your frustration and hope you can get some answers.
what frustrates me is I never had all these headaches and other pains two years ago definitely have got worse
I really do sympathise with you Rottsuzi. 🌸
💗💗
I remember sal volatile as smelling salts, I'm not surprised that drinking it made you sick.🤢
Yes, I looked it up and as you say it’s smelling salts! I tried telling her that it made me feel worse but she wouldn’t listen. 🤐
The nausea/vomiting may therefore be adrenals...and co-incidental with headaches.. but as said previously not a good situation for you... it does need a linked up view. .. so sorry you aren't getting that at the moment.
that’s what I was thinking it’s only happened when I got too low on my preds
Which is to be expected - you need what you need!!!!
thank you for all your advice it just leaves me not knowing what to do with all this medicine I am on
Well if it’s not PMR for sure you can wean off both Pred and MTX - but needs to be done carefully, and under medical supervision…. can’t just stop it.
ye im at 5 now so going to drop to 41/2 and keep dropping over several weeks
okay..but keep an eye out for any adrenal issues ….
I will , thank you x
If it were me I think I'd stop the MTX first and see how you do. To taper off the pred with the adrenal function as primary concern could take a lot longer.
I did say that to her what is the point in injecting myself once a week if I don’t have this and I don’t really see what it is doing for me as I’m still hitting stumbling blocks as I lower the preds
That’s what I’m going to do x
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