Steroids.

[Chazzi]

Hi. Guys I haven’t been on here for a while, so much has happened since my last post. So let’s start from the beginning. 10 years ago I thought I had a normal life, I was a nurse I had two grown up boys nice house nice husband, drove my car life was pretty good then although we all moan about something trivial don’t we. I had, had a knee replacement 18 months before which went reasonably well.

Or so I thought but it turns out that was the start of my somewhat different life. To cut a long story short I was told I had rheumatoid arthritis it started with different joints being stiff, at first I had steroid injections into the joints which worked quite well but that wasn’t to last as I then developed leg ulcers I ended up after a while of taking sick leave and various hospital admissions having to take medical retirement. I was then put on the dreaded steroids

although at the time they were to be my saviour there was no talk of side effects then that was as I say 10 years ago. And believe me I have cut out a lot in between . But the side affects that I have now are osteoporosis including dowagers hump (curvature of the spine) Vasculitis oh and I still have the leg ulcers had to give up driving as well as work I can only walk with crutches, and I’m a few stone heavier than I was then. My RA Consultent is trying to get my steroids down but it’s a slow process I have just had two rituxumab infusions so fingers crossed, but now I have throat infection and last night I really thought my end had come as for some reason as I started to cough my back went into spasm and I just couldn’t breathe and I’m pretty sure a

Few vertebrae’s in my back have gone. So here’s the question who do I go to about this oh I forgot to say I

Have a lump protruding out of one of my ulcers which we

Thought was a vein had a biopsy and it has to be removed because of certain changes .theres been lots more in between which I can’t go into otherwise I would be typing all night. Anyway to get back to my original question who do I go to about my back my GP my RA consultant, my Dermatologist.

I think the moral of this story is always ask about your medication. I had no idea what side affects steroids could

have And yes how do I cope with rib pain.?

[SheffieldJane]

What a nightmare Chazzi. I had no idea either. God it just comes and snatches your life away. I hope that you get through all of this and quickly. Wishing you all the best of everything!

[HeronNS]

First off, let me say how sorry I am you have had to put up with so much. To answer your question, I would go to your GP as that is the person who coordinates your care and should be able to determine which of those specialists, or possibly someone else completely different, you should see. Whatever, I hope you see someone soon who can help you along a path to recovery. Best wishes - and keep us posted!

[PMRpro Ambassador]

Unfortunately, we on this forum don't have a lot of choice about medication - pred, pred or pred. And we do talk to newcomers a lot about the potential adverse effects of corticosteroids and how to minimise them. However - vasculitis is NOT normally associated with corticosteroid therapy since they are a firstline THERAPY for vasculitis. And most rheumatologists would include a bisphosphonate to reduce the risk of osteoporosis due to long term pred - was that never discussed with you?

I am wondering why you are assuming the back pain is bone-related? When I have similar problems it is almost always a back muscle that has gone into spasm for some reason. The first step would be the GP who should offer an open-access appointment for an x-ray to be sure it isn't a vertebral problem. Then the next step would be an orthopaedic specialist if there is evidence of bone-related problems. If there is no sign of fractures or disc problems then a physiotherapist would be a good place to start. I really don't think a dermatologist would be any help at all - their attention tends to be rather more superficial

The rib pain could either be referred pain due to a spasmed muscle irritating a nerve or it could be costochondritis - time and rest tends to be the answer there.

It is very unusual for RA to be managed with pred alone, it is mostly to reduce inflammation and pain in the short term while DMARDs start to take effect which can be some months. It is also unusual to go straight to rituximab without having failed DMARDs - have you not been on anything else?

Was it never suggested to you to cut carbs in your diet? Even on crutches and unable to exercise I was able to lose 35lbs of PMR and pred-associated weight by cutting carbs drastically and lots of members of the forum have similar stories to tell. Reducing simple carbs and sugar also helps with inflammation as sugar is very pro-inflammatory.

[DorsetLady PMRGCAuk volunteer]

Hi Chazzi,

You're obviously in a very bad place at the moment - and I'm sorry for that - and I don't wish to sound unsympathetic - I'm not believe me, but you have to be realistic about the illness and the medication.

As a nurse I'm sure you've come across people in a much worse state of health than you are at the moment (although you may think that hard to believe) and all medicines have side effects. Far too many if you read the patient information leaflet.

Many of us on here have no choice but to take the meds - even after consider damage has been done by illness.

PMR is not life threatening like cancer or heart issues, although it can be life changing, and all side effects can be mitigated in some way.

It comes as a shock to all of us, but with the support of your family (and this forum) you will get through it.