ME, RA and now Osteoporosis too- oh yippee. - NRAS

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ME, RA and now Osteoporosis too- oh yippee.

AMDP profile image
AMDP
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I saw my Rheumy on Thursday. The results of my hand and feet ultrasound, shows that the lump on my thumb is actually Osteoporosis. He is also sending me to a Connective Tissue specialist. Oh yippee, more research required. He told me he didn’t feel optimistic that I would be allowed Abatacept. So I need to write another appeal. Pleading and begging for drugs that will keep me, mobile and gainfully employed is so utterly humiliating.

I spent Friday feeling really miserable but decided I have two options, sit around and feel sorry for myself, or get on with living as best I can. So now I am going to take my dogs for a walk, albeit a short and slow one. Ax

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ooh so sorry to hear this.. were do you live?

AMDP profile image
AMDP

West Cornwall why?

LavendarLady profile image
LavendarLady

I was under the impression it twas down to your consultant whether or not you get the anti tnf, not down to you to have to plead for it. Something wrong there I think. Good for you girl for your attitude - we all have to try and get on with it even when some days you really feel like giving up. Hope you get some better news soon. I would pester your consultant about the anti tnf drugs and get him to do something about it. It is his job after all! Best of luck. LavendarLady

AMDP profile image
AMDP

Ah thanks Lavendarlady, I think my consultant is trying his best. But pester him I shall. Ax

was wondering becasue the map has a place name that looks german?? are you near to the sea?.. hope you can get the drugs that you need xx

saw the name zennor on your location map and thought it sounded like a german name.. funding an issue in gl..... shire is it the same in cornwall or rather west cornwall? do you know? xx

AMDP profile image
AMDP in reply to

Hi Summer, Yes I am not too far from Zennor. Quite a few Cornish names sound a bit Germanic.

I Shall continue to pester my Rheumy to see what plan B is. Ax

Tricia-P profile image
Tricia-P

Sorry to hear this, I've a friend who has had the opposite, he had osteo in one knee, but it wasn't feeling so good, in fact he felt very ill as well like flu he said, and yes he has RA as well. The Rheumy has said that they must be careful what anti-TNf they could use as their are some issues with Osteo and RA together. My understanding of the system is there is a start line for the Biologic drugs and there can be problems with bone loss from them as well please call your rheumy's to get a better understanding, and try and hang in there, we all know its not easy but keep blogging and let us know how you get on.

xTricia Px

HarleySue profile image
HarleySue

Sorry you have now got osteo aswell as RA . I had osteoarthritis in both knees diagnosed 5 years ago but I was deemed too young for knee replacement and I was stubborn enough to want to keep riding my motorbike. In fact I convinced myself that the vibration over 30 years of riding had probably caused my knee problems so got on with it using heat pads & pain killers. Then 2 years ago I was diagnosed with RA and it was bad, I couldn't move, but my osteo consultant said he couldn't treat me until the RA was under control. It still isn't of course but I am better than I was and I take MTX, prednisolone and CIMZIA anti tnf injections together with painkillers when needed. I have got amitriptyline 10mg which does kill the pain & help me sleep but I feel like a zombie on it so keep it for really bad days! The consultant makes sure I take alendronic acid aswell as folic acid to keep my bone density up. I hope you get good treatment soon and I hope my treatment history helps you although I realise we are all different. NRAS has a really good booklet on Biologics which I found very helpful.

Keep badgering.........Sue xx

AMDP profile image
AMDP in reply to HarleySue

Hi HarleySue, thanks for sharing your story. Poor you, it really is so awful isn't it? I feel for you. Yes I have the NRAS booklet it is as you say very helpful. I shall see what my Rheumy suggests next. Take care, Ax

AMDP profile image
AMDP

Hi Summer, Yes I am not too far from Zennor. Quite a few Cornish names sound a bit Germanic.

I Shall continue to pester my Rheumy to see what plan B is. Ax

good luck with all xx

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