Anybody with similar symptoms? Also q's about Solpadol

KateBrun

Hi all. I have had rheumatoid arthritis since i was 14 years old (I am now 29). At first it swelled up (my knee, feet etc) really badly. I went onto Methotrexate at the time and after a while my arthritis got much better and i was able to work as a waitress, move around freely and not be in too much pain.
About 4 or 5 years ago it started to get worse and worse, but this time with no swelling. My lower back swells a bit in the middle but my knees, knuckles etc do not swell but hurt just as painfully. It feels like a pain deep inside my knees, hips etc. My lower back and hips are especially bad. I tried methotrexate for a good year and this time it did nothing but make me feel sick (I have also tried steroid injections and another drug similar to metho). At one point they thought it might be ankylosing spondylitis but my neck or spine have not started to freeze or disfigure. The last time i went to the specialist they didn't seem to know whether it was rheumatoid or ank spond and aren't giving me any guidance or help to deal with it.
I can't stand at the sink for a few mins without it getting ridiculously painful, or walk around my town (which is very small) or get around the shops like asda etc without it becoming unbearable. And nightimes are very painful, I always have broken sleep.
The physio said i need to exercise and push my walking more but i do exercise and stretch daily and then it flares up really badly and i'll have to stop for a bit then i do it again (exercise) but it really doesnt seem to change it at all. I also eat healthily etc. I feel like they play my pain down because i can move about but it still hurts too much to get on with daily life in any sort of normal way without a lot of help and a lot of pain and frustration (which i have learnt to keep at a minimum because when it gets to me it's overwhelming).
I would like to have any advice on what to try next. It would be lovely to hear from anyone with similar symptoms or who might have more of an inkling as to why it has changed (from swelling to not), what might be going on and what to try next.
I also take solpadol daily at the moment (only about 2-4 tablets 30/500 a day as i'm scared about taking more than this long term...I'm still only 29 and it seems to be lasting so long i dont want to do myself more damage).
Sorry it's such an essay, didn't mean to be. Thanks for listening, Kate x

[Deleted User]

Hello Kate
I'm sure our lovely members will reply to your post and offer you support too...they are a very caring bunch of folks.
But just in case you feel that it would be good to speak to someone in confidence, then please do phone our helpline folks... The number to get them on is 0808 800 4050 (number is at the top of the page)or post on the Chat to Helplines Forum.

Best wishes!

ModeratorIA

stickywicket

In my experience swelling isn't compulsory for RA. I've had it when things were very swollen and when they were hardly swollen at all. There isn't a definitive pattern. I also don't think it matters too much, in the way of treatment, whether you have RA or AS.

I'm a bit puzzled as to what your current treatment actually is. Am I right in thinking that you took methotrexate when it all first kicked off but then came off it? And, when you flared again 4-5 years ago, you tried meth again and another DMARD and steroid injections all to no avail? So, what is your rheumatologist prescribing now? I presume it's the GP who is prescribing the pain relief? If, as you rightly say, you 'don't want to do myself more damage' it's vital you take a DMARD of some kind though that won't get rid of all the pain. Pain is something we on here all learn to live with.

I think Mod IA had the best idea. If you call the Helplines they'll be able to listen to your concerns and help you work out a way forwards. If you don't want to do that then I think you should get back to your rheumatologist and work out together which meds would be best for you.

ouchpotato

Hi Kate, I'm sorry to hear you are suffering but I can empathise so much. I am due for my second MRI next week to see if I have ankylosing spondylitis - I already have osteoarthritis in my spine, facet joints, knees, hands and shoulders but the x ray I had picked up changes in the sacroiliac joints, so I have to have a second scan to specifically check the SI joints.

AS doesn't have to include fusing, and anyway it takes years for any damage to show up on xrays and MRIs, or so I believe. Have your SI joints been checked? I think that is the hallmark of AS...changes and/or inflammation in them.

I also suffer dreadfully with my lower back and hips. I can't wash up without leaning against the sink and slumping forwards slightly. I can't stand for long, or sit for long, and I can't walk around town anymore either...after a few minutes I am desperately looking for somewhere to sit down.
I also feel like my lower back swells...I can't see it so it's hard to tell but it feels spongy, and it's always hot.

I can't take NSAIDs as they cause me stomach problems, so at the moment I am on cocodamol (solpadol) 30/500 but I only take them when I really need to, not because I am worried about being dependent on them (I have learned on this site that there is a difference in being addicted and dependent) but because I am worried that when the pain gets unbearable (as it does) I will have nothing strong enough to take the edge off (I have also learned on here that they are not pain KILLERS, only pain DULLERS because nothing actually kills the pain!!!) I have also recently started on amitriptyline at night to help the nerve pain that goes down my thigh, and to help me sleep.

I am hoping that after my scan I will finally get some answers and can take the right meds as I am only 45, and a single mum, and I want to slow down the progression as much as I can.

I hope that helps, and keep talking on here, they are a fantastic bunch of people!

x

Cariad71

Hi Kate,

I have some similar symptoms to you, and my arthritis has definitely changed over the 7.5 years since I've been diagnosed which my rheum has said does happen.
I'm rheumatoid factor negative (sero negative), HLA B27 positive. I was confused for years about my diagnosis as I thought you had to be labelled 'RA' or 'AS' etc.

Mine started with peripheral symptoms, mainly feet and my ankle swelled like a balloon. Got those symptoms under control eventually with first sulfasalazine then methotrexate. When my symptoms started reappearing a few years ago and since then, I get what I'd call mild peripheral symptoms, no visible swelling usually and sporadic joints affected, luckily it seems to jump around different joints but never massively affect the function of any of them. However my predominant symptoms (and the ones i find most disabling) the last few years is sacroiliac/hip pain, and more recently pain or a general soreness around the rib and chest area. I've had 2 MRIs, one very recently and my rheumatologist keeps saying it doesn't exactly show sacroiliitis, so I haven't got enough to diagnose AS over RA at the moment. My sister has AS and when I look up the symptoms I feel I fit more into this than RA.

I find it frustrating when he says this because I'm like 'well there's certainly something going on down there!' and when it doesn't show up on an MRI you don't feel justified! I've also read that changes in AS can take a long time to appear on an MRI or xray and can confuse diagnosis, although I'm very happy I've got no degenerative changes (yet). Just recently I think I'm learning to accept that my label of 'sero negative inflammatory arthritis' IS a diagnosis as my rheumatologist says, and theses diseases can change over the years and even be called 'undifferentiated' which I think means they never fit perfectly into any of the categories. I've also just started telling people I've got RA when they ask what's wrong because if people have a poor understanding of RA, they sure as hell don't understand 'sero negative Inflammatory arthritis'!!

Like you say the management isn't hugely different whether you've got RA or AS, ultimately the goal is to control inflammation for as long as possible to prevent long term joint damage. Saying that, the guidelines for e.g. DMARDs and biologics is quite different for AS, and there's a huge emphasis on excercise and physio like you say. I try to keep active when not flaring but like you when I have pain I find the excercises can make me better at the time, but worse later on.

I have to say I don't entirely agree that we all have to learn to live with pain. I'm lucky that I was seen by a rheumatologist and diagnosed and started on a DMARD VERY quickly when I was 21, within weeks, thanks to a good GP. i also seem to have a milder form of autoimmune arthritis than many on here, unless my early diagnosis and treatment has allowed this. But at our age you shouldn't have to accept pain and disability as your lifelong sentence. treatment has changed massively since years ago and it sounds like you need to be on an awful lot more than co-codamol! I hope this doesn't offend anyone, but the older people on here who have learned to live with pain and permanent disability are examples of where the medical profession went so wrong in the past with dealing with these diseases. This is now well recognised and emphasis is on early diagnosis and treatment with aggressive drugs that can prevent a lot of the damage.

Sorry about the essay, maybe my opinions will change if I don't get mine back under good control again and maybe i haven't had it long enough or bad enough and am just naive, but at the moment I can't accept that I'll live a life of pain and immobility!

Speak to someone soon, you shouldn't be surviving on co-codamol xx

barbara12

Hello Kate
Sorry I cant offer any advice, I have OA, but like you say some GPs do play down the pain..but suppose its not there pain so its hard for you to get it across.
I do wish you well and see that some of the others have given you some good advice...xx

KateBrun

Hi everyone, thanks so much for your replies I found them all helpful. Just off to the rheumatologists now and am going to see what I can try next as I dont want things to just get worse and stay like that. I will let you all know what happens. Thanks again and I hope you're all ok today, although its b****y freezing so probably mot! Love k xxx

stickywicket

Thanks for the update, Kate. I think that was the best possible solution. Please let us know where you'll be going from here.

KateBrun

Hi everyone. I had a stand in doctor yesterday who was massively helpful! I was lucky enough to have my sister with me taking notes so I could concentrate and ask questions. Im going to copy and paste the notes in a min in case they're helpful to anyone or anyone has any more advice for me. Cariad71 it sounds like we have very similar symptoms indeed, I forgot to mention but I get that rib cage pain too and I wake up feeling a lit of pressure in that area.
I was so lucky to get this doc as the last two didn't give me any direction or advice, they didnt explain clearly that they now know I do NOT have rheum arthritis and the doc yest was a bit miffed as to why id been given methotrexate recently when the symptoms ive had (for the last 4/5yrs) are not likely to be helped by methotrexate!!!!

Here are the notes my sister took:
Not rheumatoid arthritis, testing for specific marker (bloods) but would be very surprised if it is there.
Enthesopathic arthritis would be the closest label, behaves like ankylosing spondylitis. Methatrexate helps with periphery joint pain (wrists, knuckles, etc) from Rheumatoid but not A.S which causes pain mainly in the spinal area and sacroiliac joints.
I have genetic marker HLAB27 (6% of population) denotes A.S.
MRI will pick up any permanent damage/fusing but X-rays will not show it. (Look up last MRI scan results).
Prescribing anti-inflammatorys for spine/sacroiliac pain/inflammation.Continue with exercise. G.P may be reluctant to prescribe the anti-inflams (Arcoxia) but Doc has explained in a note why she needs heavy-duty ones (best for spinal symptoms).Take as and when you need them, no need to take every day.If they are not working go from 60mg to 90mg and stop taking them if no change seen at 90mg and see rheumotology clinic again.Go back in 6 months.
Thanks again for your help everyone. I will keep you updated as I start taking the new medication. Kate xxx

Cariad71

Hi Kate,

I'm really glad you had a good dr and got some answers. Yes our symptoms sound very similar! I wouldn't be too disheartened though if they tell you after your MRI that they can't definitely diagnose AS, like others mentioned even an MRI doesn't alway pick up the changes.

It's great your sister took such good notes, I always come out of there thinking 'umm so what exactly did he say?'!. It sounds like the 'marker' they'll test for is rheumatoid factor? I'm negative for that but have been told that you can have RA even if negative for rheumatoid factor, but positive people tend to have more aggressive RA.

One of the reasons I started coming off the methotrexate was because I started to think I had AS and like they said, there's not a lot of evidence for its use in the more spinal symptoms, and I hadn't suffered peripheral symptoms for years. I've also been told I'm likely to be experiencing 'enthesitis' like you, which is inflammation where ligaments/tendons insert into bones. When I've looked this up, I get it in the most common sites; SI, ribs (I think where they join the spine which is what it feels like), Achilles' tendons and sometimes others.

I've been on Arcoxia on and off for a few years, it is very good so I hope it works for you. Its specifically has a license for AS and sacroiliac pain. I've always taken the 90mg, and recently when I was really bad he prescribed a dose of 120mg for a week only which is normally the dose used for gout (I'm not suggesting you do this without their advice, they'd have to prescribe that dose for you anyway), then reduced back to 90mg which I'm still taking. My GP has added it to repeat now with no problems so I'm sure it will be fine, especially if rheum is writing to them.

Good luck and let us know how you're getting on xx

stickywicket

That sounds like an excellent appointment and full marks to your sister for taking such good, comprehensive notes. I hope the new regime helps you.

Cariad71

Hi Kate,

Just wondering how you're getting on with the Arcoxia? Hope things are improving xx

KateBrun

Hi all, thanks for your replies, and thanks cariad7 for your notes, thet're very helpful its nice to hear from someone with such similar symptoms.
I'm soo lucky to have had my sister with me, I can never get all my questions out and remember what was said on my own and she's very organised .
I only managed to get my prescription yest so took the first one today. I will be taking them with solpodol (as and when I need).
I'll write again next week hopefully to let you know how I'm doing, the dr said I should feel the affect pretty soon (not like methotrexate where you have to wait months). Thanks again kate xxx

KateBrun

Hi all I think the arcoxia is helping a bit . I forgot to take one yest and pain was much worse in lower back and hips, i always find it hard to judge if the pain has got better until it comes back! Also i have been able to do a bit more (i.e pottering about, doing a bit of washing up) before having to sit and relax . It doesn't seem to be helping the pain in my right hand though which has been pretty bad this week. Has anyone else found that it only helped back and hip pain and not the rest? Anyhoo really glad its had some effect because nothing but pain killers has helped in years , kate x

KateBrun

Just realised there's a lot of smiles in there...I must be feeling good! X

stickywicket

Hey, it's good that you're feeling good, whatever the reason The little spurts of activity will help too. I don't do arcoxia so can't help with any info, I'm afraid.

Cariad71

Hi Kate,

I'm really glad the Arcoxia is working for you!

I thought it wasn't doing much for me anymore but last Friday I ran out and didn't take one, well I thought I was having a bad day anyway but by that night and the next morning my SI pain was sooo much worse! I then realised that its actually doing a lot for me. Like you I do find it doesn't always work for the more peripheral joints, my foot has been flaring even while on it and the prednisolone so my rheum injected that last week. It also doesn't seem to get rid of the chest/rib pain but I think it dampens it a bit.

I'm also enjoying a few days of feeling better, maybe its this nice weather getting our serotonin going! Xx

Cariad71

Ps have you tried very gentle swimming when you're feeling a bit better?

It's highly recommended for AS type diseases and its one excercise I have managed to do over the years. If my SI or hip area is a bit painful I use a float between my legs and swim front crawl using my arms, it helps mobilise your spine and make it less stiff with very little stress on the joints. I wouldn't recommend breast stroke though, it tends to make mine worse. Also, if you do it you must swim properly I.e. goggles and lovely cap because you'll strain your neck otherwise! I just find it makes me feel mentally much better when I do it, I've managed to go a couple of times in the last week or so