Rhemy visit and counselling

[lynabelle]

Finished my 6 weeks counselling with mind and depression has lifted , so feeling a lot better in that respect.

Went to my rhemy appointment last Wednesday and told him I am down to 10mg pred, he has now given me methotrexate to take once a week , he said it was like scaffolding when you are coming down off pred.

I asked him for a scan "what do you want a scan for" he said, I told him that some days I can hardly walk with the pain in my back and hips and I even find it hard to (so sorry to be so course) wipe my own bottom !!

He now tells me that I have osteoarthritis in my hips and back , I knew I had it in my knee but this was news to me.

And I still don't get my scan , are they really expensive or something because if I ask my doctor I get fobbed off as well I think it's a dexa scan I want, but basically I just want to know what is going on inside me.

Took my methotrexate yesterday and felt really good and I was able to walk round really good, my husband said it was like a scene from cocoon !!!!!!

Today though I am back to the normal achy me !!! But I had a really good day yesterday.

Wednesday I have to go and see asos as I am on esa so I will let you know how that goes.

[Annodomini]

A Dexa scan is for the diagnosis of osteoporosis. You should have had one, because pred is responsible for bone thinning, but for some reason not all GPs are keen to send us for these presumably because they are expensive! I had one because a research organisation wanted subjects for some project they were planning. I had the scan but wasn;t suitable for their study.

[venezia1]

I only got a Dexa scan because I asked for it twice. Fortunately it showed no osteoporosis. So then I pressed for an MRI scan, which showed I had no cartilege in my hips, hence the awful pain I've neen in for nearly a year. If your GP sayd you have osteoarthritis in hips and back, he should send you for an MRI scan to see what's going on and if you need replacements.

[lynabelle in reply to venezia1]

I will keep asking but it's like they really. Can't be bothered sometimes, I am due to see my GP on 21st October so will ask for am MRI scan then and let you know what happens

[trish29 in reply to lynabelle]

Good Morning lynabelle . I hope you are feeling better and you are keeping on at your Medical team for that DECA Scan .I had x/rays on my spine which showed osteo-arthritis in 3 places in the spine which is causing most of my pain. My Gp suggested getting hold of my Rheumy because I just can't get down on the steroid. I am so lucky that I have got a new Rheumy appointment for the 30th Oct and not the 18th Dec so it proves that we have to keep asking for things. I admire you completing your 6weeks of counselling GOOD FOR YOU!!. Today I am going with a fellow PMR sufferer to a PMR/GCA support meeting at Chertsey and we have a speaker on pain management so I will be all ears for any tips. Being with fellow sufferers makes you feel that bit better . I have felt so frustrated with it all lately. You probably find that not being able to get about- even in the house it is a struggle. Keep asking and keep fighting this awful condition . I think about what you are going through quite a bit this site is so good at making us realise that other sufferers have their problems as well. Keep in touch trish29

[lynabelle in reply to trish29]

Good morning trish , well I still did not get my scan , he says I don't need one as he can tell me that I have osteo arthritis in my hips and spine(he has obviously got X-ray vision like superman) seeing the doctor on 21st October so I will badger her then , got my atos assessment this morning , really not looking forward to that.

[Whittlesey in reply to venezia1]

Yes, I agree. An MRI is necessary to show the situation with the hips. Had an MRI and I, also, have no cartilige in my left hip, and need a hip replacement. Will have one as soon as the prednisone is down to 5 mg s and stays there. have recently been diagnosed with dissection on the cartoid artery. frightening.

[lynabelle in reply to Whittlesey]

That sounds really frightening what will they do about that?

[Whittlesey in reply to lynabelle]

A thoracic surgeon may place a stent in the cartoid artery to prevent the aneurysm from breaking into the artery (leading to a stroke).

I am taking an aspirin every day and for a week or so an extra medrol, so it's 10mg per day. I think they believe that will help to heal the dissection.

This is apparently a problem with GCA. It can move to other "large vessels" or arteries (brachial, aorta and others).

Believe these need to be checked, periodically.

Have had an MRA (MRI of the arteries) of the head, neck, chest and back. That is where the cartoid dissection showed up.

I believe they are treating it somewhat as a flare.

On the integrative medicine side, I am taking three "beet root" vitamin pills every day. They are supposed to help build up the arterial walls. Hoping they are.

Believe this needs to be checked with those diagnosed with GCA.

thanks. wishing all health and a healthy future

Whittlesey

[ricardian1]

I can identify with Lynabelle as I'm now down to 6 mgs pred after 2 years and 4 months, I asked my GP where arthritis sits with the PMR due to pain in feet legs, knees, hips that makes walking so slow and difficult etc. So now I await a 2nd DEXA scan at end of October but no other check. I have never seen a rheumatologist as my GP was in that dept and I trust her though I am in a muddle about the slow reducing pred plan. Thank you for these pages and best wishes to all especially those with more problems than me.