Newly diagnosed and need advice about Ank Spo!

Chocoholic

Hi Maria
I was on naproxen for five days and the pain went away but I seemed to be breathing more shallow. I put it down to the naproxen and came off to see under other GPS advice. However I'm still breathless and don't know if it was the tablets. Rheumy suggested diclofenic which she said was worse. I'm stuck between the two and been terrified into taking any now. Yet today I'm really uncomfortable xx

Chocoholic

Uncomfortable with pain I mean. I'm seeing rheumy next week but I know they will be disappointed as this is the second time I've not persevered with the meds because of my gp x

dreamdaisy

You didn't have proof that it was the nap, I took it for a couple of years without any breathing troubles (I'm asthmatic) and with no benefit for the arthritis either. GPs have a duty of care but because side effects are listed does not mean that they are going to show up. This must be very bewildering for you if you have enjoyed better health up until earlier this year. Someetime I am very thankful that I've never had that luxury! DD

AndyMaz

Hi, I'm currently being treated for Inflammatory Arthritis/AS.

I started getting back pain some 13 years ago and I just put it down to the fact I was in a high intensity job with the Army. Military doctors prescribed me Ibuprofen and sent me on my way. I've had years of on/off back pain.

Last June (2012) I went to my GP because over the previous 12 months I noticed a significant change in my back pain i.e. it was practically always there. I've had X-Ray's and MRI scans, my Rheumy said he can't see the inflammation he would expect to see. The blood test showed the presence of the HLA-B27 gene (my father has full blown AS).

So far I've been on co-codomol and naproxen which made me feel sick and did nothing to help. Ibuprofen which didn't touch the pain and finally diclofenac, which helps immensely. Aqua-therapy was also really good and I find gentle stretching helps.

With all that said I'm yet to have an official diagnosis of AS. I've seen "spodyloarthritis" and "Inflammatory Arthritis" mentioned on paperwork written by my Rheumy, but that has never been communicated to me. My physio says I carry all the hallmarks of AS, but to date no-one has ever told me what the issue is, so I'm being treated as having AS.

I've never had any issues with breathing or side affects of the diclo, so I guess I'm lucky. I did have asthma up until 5 years ago, but with giving up smoking it seems to have gone away. MY GP now prescribes me months and months worth of diclo, which is what the Rheumy put me on in my first appointment with him.

I'm going back to Rheumatology next week for my 4 monthly check up. Nothing has really changed for me, but I have has a couple of flare ups which were so bad I couldn't stand up straight. I get both pain in my lower back and thoracic spine which wakes me up at night, during a flare up getting out of bed is quite a mission, daily it's a struggle, but manageable.

I'll stop waffling now, but I hope you get the pain relief that suits your needs.

Chocoholic

Thanks for posting andymaz! You're not waffling, I joined this forum to hear others experiences. You've had a tough time. I'm frustrated because of conflicting advice and it's my health they are arguing about. I just want to feel like me again xx

Chocoholic

Ok well I took two ibuprofen today and so far so good! That's positive for the naproxen I hope! X

dreamdaisy

That's a start and well done to you. It can be daunting taking meds if one has had a rough experience but (to thoroughly mix my metapahors) bullets have to be bitten, bulls seized by their horns and nettles grasped I wish you well. DD

Chocoholic

Well six hours after taking it I had about 15 mins where I felt so restricted and couldn't get a deep breath. I don't understand tho because by then surely the ibu will be worn off? Really depressed me again x

dreamdaisy

I doubt that the tablets caused, especially six hours after, that but none of us on here are docs. Have you thought about having a chat with your pharmacist? They are very knowledgeable people, well-informed and probably know drugs better than the docs! DD

Chocoholic

Hi Dreamdaisy
Good point I will talk to the pharmacist tomorrow. X

Chocoholic

Spoke to pharmacist who says reactions can happen at any time but would get more severe each time I took one. Back to square one then! X

Chocoholic

Back again...just need a boost really.
I have my rheumy apt this week so that's good I hope I get some more help.
But tonight I've hit a wall again. It literally happened in seconds like I hadn't got the energy to walk from one room to another. If I'm honest I'm finding this all a bit too much at the moment. I keep hearing how people find the right meds and feel like their old selves and am desperate to feel that way again. I get tearful when I'm like this as I'm frustrated. I have two small children and want to enjoy them and feel angry that I feel like this so young. I'm not on meds at the mo because of gp thinking I might have had a reaction to them. But I think it's the costochondritis I have as well. I don't get awful pain with the costo but feel constricted sometimes when I breathe.
Does life stay this way, is it a case of getting used to being useless? That's how I feel just now. Xx

Toots

I'm so sorry you're feeling this helpless hun x As usual, I can offer nothing but hugs, and would suggest that you lay this out to your rheumy when you see him. They need to know how you're coping, or not. x

Chocoholic

Thanks toots I will. The thing is I'm quite positive about fighting it as I have the right exercise regime but the meds situation isn't helping so I feel in limbo. Thanks for your reply xx

maria09

Hi
I do understand how you feel the last 4 years have been hell on earth with nothing medication wise helped
2 years ago I was diagnosed with AS my rheumy kept asking me if anyone in my family had Crohns or ulcerative colitis and I kept saying no he kept saying that's strange as they both go hand in hand with IBD it wasn't until my daughter became seriously ill requiring 3 units of blood that we found out she had Ulcerative Colitis to which my rheumy looked pleased with himself and said I told you it was somewhere in your family.
I think I've had this condition much longer as I had started with low back pain 25 years earlier but that was put down to the nature of my job
I have been on and tried most medications out there and in Jan this year I started on methotrexate along with my usual sulphasalazine and Eterocoxib and nothing seemed to be working they then decided to try the injectable methotrexate at the end of August this finally kicked in in middle of October and I found I was walking much better and although I still have pain it is not as bad as it was and I'm reducing my tramadol
Our conditions are difficult to treat and it's all a bit of trial and error and as we are all individuals what works for one will not work for another
Its a game of wait and see and a case of trying to keep patient until the right one comes along which is very difficult and frustrating to do
I hope it kicks in for you and starts to work soon
Best wishes
Maria

Mat48

I have RA but with extra symptoms now that meant I was put on a Parkinson's drug a few months ago. This gave me a very unpleasant few weeks with breathlessness and sweats and episodes of sudden narcolepsy. I ended up in hospital overnight when I explained to the on call doctor that I had chest tightness and trouble breathing. They checked my heart which was fine - as I knew it was - but when the hospital doctor prodded the area around my heart it was really painful. He said this was the RA, which he described as a very insidious disease, and put it down to inflammation around my ribcage.

I asked my GP about this later and he said this would be Costochondritis. I don't really suffer from the breathlessness anymore and am guessing it was just a combination of a flare up of my RA alongside this new powerful drug. I do get palpatations just before I go to sleep currently but think this is probably psychological. I think I am also being assessed for having different autoimmune conditions/ mixed connective tissue conditions and spondyloarthritis too. If your problems are caused by Costochondritis then this is supposed to be benign - but very unpleasant nonetheless. You should probably be checked for Asthma too from the sounds of things.

I hope you feel better soon (as I do) and try not to worry too much as this won't help your breathlessness. At least the recent chest x-ray was clear. It's a very big thing to try and come to terms with having one of these conditions - I'm still not there yet and it's been two years since I was diagnosed! Mat x