Me Again

[Wonderfullifeandmore]

Hi everyone, just an update in my miserable journey. My private as I still haven’t even reached the waiting list for an NHS one I am on the waiting list to get to the actual waiting list. Had informed me I have Inflammatory arthritis as well as PMR. I

Am unable to take methotrexate so am on Hydroxychloroquine 400mg daily he flatly refuses to give me any steroids and I don’t think the HX has kicked in yet. I have inflammation in my stomach and back went to A & E by ambulance after calling 111 they prescribed Pregabalin for neuropathic pain.

I am suffering from depression and anxiety so badly my GP has referred me to the mental health team.

I just don’t know what to do anymore.

I supposed I just need to vent but feel I’m just fighting a losing battle.

[Wouldlovetorun]

Sending big hugs💐x

[SheffieldJane]

I admire the fight in you so much! Your depression and anxiety is so logical and your persistence is admirable. Please stick with us. Many people are reading your story with helpless rage. Something will shift, you’ll see. Never quit. 🩵

[PMRpro Ambassador]

Do bear in mind that HCQ isn't a guaranteed management strategy for PMR. Like MTX it works for a small cohort of patients - it is a matter of luck, It may not kick in.

[Bridge31]

I’m a bit confused. Why has he flatly refused to give you steroids ?

[Wonderfullifeandmore in reply to Bridge31]

Because he said they are for short term use only and I have osteoporosis.

[PMRpro Ambassador in reply to Wonderfullifeandmore]

Except they are NOT "only for short term use" when the diagnosis is PMR or GCA. Then they must be used longer term. No other drug works so effectively. There are other ways of dealing with osteoporosis - medications which can be taken alongside pred. If your PMR progresses to GCA then you MUST be offered pred to start with or risk losing your sight, totally and irreversibly. Untreated PMR is felt to be more likely to progress to GCA - and then you are talking about doses of 40mg per day and up.

He is correct in saying they are for short term use in much of rheumatology, inflammatory arthritis for example. But in PMR and GCA it is pred as long as you need it. If he is accessing biologics for you, he is looking at the wrong ones. The options for PMR and GCA in the USA are Actemra for both and Kevzara for PMR. In the UK, since you have a diagnosis of RA, he should be looking at trialing RoActemra since it is approved for unlimited use in RA. I suspect he doesn't know much about PMR and GCA and needs calling out on the fact. Or he needs to decide it is RA alone.

[Viv54]

Hi how awful for you, your not on your own lots of people go through really hard times and you really can get better. I see you are taking Pregabalin. When I first started out in my long journey with PMR the Dr gave me Pregabalin they made me feel awful.I was in a very low mood with them, plus it did not help my pain.After a talk with my Dr I came off them and my mood started to lift. It's natural when your in so much pain to feel down.Read the pamphlet that comes with the tablets.If you don't think they are agreeing with you go back and talk to your Dr.Chin up think positive it will pass.🌹

[Temeraire]

Sorry you are having such a tough time. Think I’d change GP if he won’t listen or budge!

[Gossiplady]

Hi Wonderlifeamdmore! So very sorry you are having a rough time which obviously depresses you. Remember to come on the forum every day. It keeps us all more balanced. We are listening to you, so rant whenever you want to. There is light at the end of our tunnels. You will come through this. My lovely doc initially said to me “you are in for a rough ride, but I promise you, you will get better.”