Continuing saga

[Lynnels]

Hi! I wrote on here a few months back asking advice on finding someone to look outside the box after being treated for 5 years for sero neg RA and was no further on. Got a lot of interesting feedback from people on here, thank you, so thought I'd update you and ask your opinion on a couple of other things.

After another flare (well don't think it's actually ever rested just think it's been masked by the prednisolone) after managing to stay off the prednisolone (really struggling though) for three weeks, I ended up at the GP as an emergency as my ribs were so constricted I was struggling to expand my lungs so couldn't breathe properly. Phonecall to the 'helpline' (a joke really to call it that when the answer message says it could be three days before they get back to you) at the rheumatology dept proved fruitless as no-one got back to me & I was seriously deteriorating quite rapidly. The GP also found it really hard to contact someone & finally (after phoning the consultants secretary to get an answerphone message saying no-one will get this message for a week & the 'helpline' mailbox must have been full as it just went dead) spoke to the receptionist who found someone who told her to fax her findings & someone would contact me that afternoon. No-one did of course but the GP got a fax that evening from my consultant saying to give me a Depo Medrone IM injection but I must have misunderstood to stop the Methotrexate. Had he not read my notes or blood results? Or maybe the specialist nurse who spoke to me hadn't updated my notes. My ALT had skyrocketed with the NSAIDs & Methotrexate combo & she had phoned me to tell me it had & to leave off the methotrexate for two weeks & then get my bloods checked & we'd go from there!! VERY frustrating dept!!!! GP then relayed this via fax to my consultant to ask if he still wanted me to go back onto Methotrexate so soon. Needless to say we heard nothing for 6 weeks when I saw and asked the specialist nurse when the 'rapid access clinic' appointment she promised me was likely to come through. When she originally said she'd put me on the list for reassessment at this rapid access clinic (you'd think the hint would be in the name wouldn't you?) she did mention it would be 4-6 weeks. Really wanted reassessing without the steroids as that's never happened. Consultant had said RA was in remission when I was still on a low dose. As soon as I came off them it all went pear shaped again. Once again I was being assessed on steroids!!!

Anyway also mention the 'Enthesitis' possibility to GP (thank you earthwitch and agoflow4 for mentioning it) who also hadn't heard of it. Told her about Chapel Allerton & she agreed it's worth a consultation. Against my better judgement she said she's ask my consultant whether he could recommend someone in Leeds (she's a new GP so she's still young and naive) as he would be happy to have someone question him. Of course his letter back was rather curt (think I'm now looked at as a bit of a nuisance) saying I have no signs of enthesitis. However GP has still referred me to someone at Leeds so I have an appointment in March Putting my faith in that as a positive way forward, for now, as I'm feeling very let down by the lack of support from my present rheumatology dept & after 5+ years I'm still unmanaged & stuck in a rut.

On another note (yeah, I realise I'm going on) when I finally got to see someone in the rapid access clinic it was a very good SPR who I've never seen before. He took time and most importantly listened. He reckons I've now added Fibromyalgia to my list and wants me to start on a small dose of either Amitriptyline or Gabapentin. Very reluctant to start on another drug especially with my ALT now not being brill folowing the Methotrexate and NSADs episode. And even more reluctant to start on one that is addictive and can add to my already substantial steroid weight gain. So I'm after any thoughts on either of these. Before I was diagnosed I was given Nortriptyline - which is a derivative of Amitriptyline - for the originaI head clanging I had before this showed itself as RA and I didn't particularly like the spaced out feel. Is Amitryptaline any better or Is Gabapentin any better? Any experiences would be greatly appreciated.

[sylvi]

Oh boy have you been through the mill. I am on lyrica for fibro/cfs and mtx,sulpha for ra and various other drugs for other things. I am sorry you have been run around the playground,the only other answer i can suply you with is go to A&E for help and see if they can help you better, HUgs.xxxx

[nomoreheels]

I do feel so sorry when the support which should be provided is needed but just isn't there. Makes me feel so grateful for my very positive early years after diagnosis & wish everyone could experience the kind of care I received. I've less faith with the team I have nowadays & keep reminding myself it's a different health system in another country though it would benefit each of us I'm sure if it could be run in similar manner.

Like you I was concerned about this group of meds as my h had reactions to some of them & I resisted for some while but I got to the stage where I really needed something & my Rheumy referred me back to my GP, which I was pleased about once I got over the shock it was OA & not RD causing so much pain. I have a good relationship with my GP & she was already aware of & understanding of my reasons for not wishing to try gabapentin, pregabalin, duloxetine or tramadol so was prepared. She suggested I gave amitriptyline & BuTrans patches a try, both at introductory dose & would monitor me by having monthly reviews. Amitriptyline has been very helpful both as a muscle relaxant for cervical problems & relaxing me enough to sleep which had become quite disruptive as I also have problems in my lumbar region. I started off on a low dose, 10mg, & over several months I settled on 50mg taken a few hours before bedtime. I still have neck problems & we talked through options again & I decided I'd try gabapentin & over a few months worked up to 1800mg daily but it didn't help me with the pain. At the time I was needing to drive as my h was recovering from an op & he noticed it affected my judgement & as it did make me feel somewhat vacant & not doing what it was intended for I tapered off it. I'm due to see if there's anything else which may be suitable & will work.

What we need to bear in mind is we're all different & react to meds differently but if you're not happy do speak to your prescriber about your concerns & hopefully you'll be able do as I did & have reviews for whatever is prescribed.

I hope the appointment in March is a positive one, seems it needs to be.

[Lynnels in reply to nomoreheels]

Hi! Thanks for replying.

One of the many reasons I don't want to go on Amitriptyline and the likes is that I don't on the whole have a problem with sleeping (apart from occasional active mind and more than occasional husband's snoring I don't not sleep with the fibromyalgia pain as that just affects me during the day, and not all the time as it appears to flare too. Does fibromyalgia flare?

Despite keep thinking I can't go on with this any more, today I'm thinking I'll try and hang on until after I see the Leeds guy in March before I add another drug to the pot.

[nomoreheels in reply to Lynnels]

Ami wasn't prescribed or intended to help sleep problems, rather the pain & discomfort of cervical & lumbar spondylosis. As it helps both points of pain by relaxing the muscles my whole body is less painful because the tension is less, it's fortunately the way it works & afforded me restful sleep. I'd never had or needed any type of sleeping med, I could always just turn off & sleep like a baby so it was quite a change for me!

I'm afraid I know little about fibromyalgia, I have RD & OA but maybe someone else could help or have you thought about also joining the HU fibromyalgia site?

Obviously whether you do decide on any of the other meds is your decision but if it was me (& you now know my reluctance to this group of meds even though ami & BuTrans has helped so much!) I would find as much self help as I could (I use a heat pad a lot) wait & see what is suggested at your appointment in March, but that's me not you.

[DelicateInput]

Amitriptyline is an old anti depressant which is not used nowadays to treat depression but is used for nerve and musculo skeletal pain - but it does not work for that as I have tried it along with countless others.

Just reading your post made me feel as if I would give up. Tell them none of this works (and neither do they or their system) and given they can't get it right, can you have a biologic.

If it were me, I would just let it get worse until you get the biologic. Just tell them each time that what they have prescribed does not work and don't take it. The point is, none of this cheap rubbish does work unless RA is caught early. In my case, I did not get an appt for six months and was well outside the timescale where this rubbish could be useful.

Personally, I use Chinese herbal medicine and electro acupuncture which works very well without side effects. I could not put up with all the nonsense of conventional medicine on the NHS and the side effects. It seems to me they are being paid for doing nothing.

[Lynnels in reply to DelicateInput]

Thinking of acupuncture so good to know that's working for you.

[popsmith1874]

Hi the acupuncture helps with my pain I have RA and oa and get it 4 weekly sessions at my physio , it's the fatigue that's giving me problems at the moment,also I've just returned to work so that will be playing a part too, with having this disease there's never a dull moment