1st post - sorry it's a whinge

[mistymeana]

Hi everybody. I've not posted on here before although I've been reading the blogs for a while and been heartened that I'm not the only one out there! Moved to write today as I'm feeling a bit bleak and sorry for myself. I took redundancy from my full-time job a couple of years ago as I was finding it too much and didn't want to up the meds just to stay in a job I wasn't happy doing. I took a few months out then found a job working in a medical practice two days a week. All has been reasonably fine until two or three months ago when the RA flared up and refused to back down again. Now I seem to have to rest two days for every day I work and its got me worried about how I'm going to manage until retirement age, given that they keep increasing it so I now have eight and a half years left to go instead of the two and a half I would originally have been looking at. Am finally giving in and going to see my GP next week to get referred back to Rheumy to see if it's time to change meds again. Scared as none of the options seem to be without nasty side-effects, although I realise you're generally only likely to read the bad experiences. Anyone had a good experience without rotten side-effects? Especially those lucky enough to have Fibro as well (aren't we the fortunate ones). Thanks for listening guys x

[Shell1967]

Hiya I'm new to RA diagnosed early September,and I'm on methotrexate,its my 8th week Monday and so far so good,I have been absolutely fine?yes this retirement age just gets longer and longer doesn't it,what a pain literally !!!!!,I know the feeling wen u have overdone it ,we had a party last weekend,and u know all the prep and shopping beforehand well and the after cleaning up,well oh my god did I know it!!! Days and days of stiffness pain and just feeling sore,getting better as days go by.think I've learnt my lesson.lovely to hear from you?what drugs are you on? Remember you are right sometimes you just hear the negatives as people who are doing well on drugs don't necessarily write about it,but when you're feeling rough etc you like to get advice and reassurance from people so its a hard one.i got told most people tolerate these drugs well,good luck at the GPS,let me know how you get on love michelle xx

[Hidden]

Hi there,

I'm not the ideal person to reply to you as I have PsA, not RA and I'm coming round to the idea that the two diseases are different in some important ways, including how they respond to drugs. And I've not had it long, either.

However, I have been on Methotrexate for 5 months now, currently on 22.5 mg weekly and I haven't had any side effects. I can't really say that I have the energy levels I had before I got ill, but they're not bad either. I do feel 'human' again & often sleep well. Mentally I can cope with pretty much anything and physically I do have some stamina now. I'm a bit grumpy about Methotrexate as it hasn't got my swellings or inflammation down but I'm beginning to admit that it might well have helped with these things that I've mentioned.

You don't say which, if any, meds you are taking at the moment. But all I can say is that I've gone from avoiding drugs except for the occasional Ibuprofen to taking Methotrexate without any problems at all.

I stopped teaching in February and I'm now working on a few projects at home. I'm beginning to think that I should emphasise to my Rheumy that I'm not retired, not a lady of leisure, that I am aiming to speed up, not slow down because I suspect that many Rheumys might try just a little bit harder with people who need to get to work(??) In any case I think that you should lay your situation on the line when you see your Rheumy so that he/she is fully aware of your needs.

I am sorry to hear that you have fibro, all I know about that is that it's a tough nut to crack. But I do think you are right about online forums generally - those who are breezing along don't usually post. Don't be scared, you've done so well so far & there's a good chance that more or different meds might lead to a real improvement in your condition that you'll appreciate in all sorts of ways, not just work-wise.

Christina xx

[helixhelix]

Well I'm doing amazingly well! On triple therapy of MTX, Sulpha and Hydroxy, and quite high doses, and it's doing the trick for me pretty well. I have had periods where the side effects of the drugs have got to me, but currently fine especially as have just swapped to injecting MTX which seems to suit me better.

Ok so I'm still mid 50's and maybe won't be same later, but so far so good. I do pay attention to diet and exercise, and trying to keep to a healthy weight and so on, but can do most of what I want. I still have to pace myself, and I really know it if I've got overtired - a bit like being a toddler again. What I've found is that I would be managing fine for quite a while, and then would start to go backwards and needed to go back to the rheumy to get my meds tweaked. It's as if my RA had got used to them and had found a sneaky way to overcome the drugs.

But I also think what Christina says about making sure your rheumy knows that you want to be fully active is important. They are so busy that I guess it's easy for them to just to treat everyone the same, but you need to get them to focus on thinking about what you need specifically. But it sounds as if you've had RA for a while, so I'm sure you know it comes and goes a bit - so do keep believing you'll perk up soon and get booking an appointment to help you on that road. Pollyx

[magglen]

Please NEVER NEVER worry about 'whingeing'. This site is a place where we can off load with people who understand and care....whereas most of the outside world can't understand if they have not suffered with RA and therefore find it hard to be interested or care.

I have been on Etanercept for a couple of years now having tried two other meds which didn't really help that much. My consultant was very keen for me to have it as he has seen such dramatic results so I think he pushed it through for me. It is expensive so you have to had tried two other meds first.

Do keep pushing and don't worry about making a nuisance of yourself with GP or consultant. Get what you need.

Good luck

xx

[mistymeana]

Thanks everyone. I'm currently on Hydroxy and Arcoxia which I've been reasonably OK on for the past few years. I doubt anything stops flare-ups altogether but they've been fairly infrequent and short-lived until recently. I guess I'm mainly worried as all the previous anti-inflammatories made me feel really sick and gave me terrible stomach pains. Hopefully won't have a problem getting GP to refer me back to Rheumy as I've finally got her to understand that, as I'm sero negative, the absence of any rheumatoid factor in my blood doesn't indicate things aren't degenerating! Going to have to ask for a stronger stomach protector as well as Ranitidine isn't quite doing the job any more. Wish me luck!

[shazbat]

Hi All I guess I am one of the ones who has now done most of the drugs. I did methox for over 4 years but my body decided it no longer liked it plus i had bad side effects. I now have injections of Cimzia which is one of the newer TNFs and you don't have to top this up with Methox like most of them. The Cimzia is brilliant, I inject it fortnightly and I don't get as many chest infections etc, as I am advised it caps your immune system it does not wipe it out. The drugs are getting better, Unfortunately they make you go through a number of the nastier drugs first.

[earthwitch]

All of the rheumatology drugs sound really scary, but actually if you really research them the benefits do seem to far outweigh the risks. Even the newer anti-tnf drugs, that originally seemed to have quite a high risk of serious effects are being proven to be a lot safer to take long term than things like NSAIDs (now more people have been on them longer so they have the data)- as well as having a load more benefit. RA is a disease where most folk can achieve a high level of disease control too, because the disease modifying drugs (DMARDS) really do the job. Sometimes it can take quite a lot of trial and error to work it all out, but I don't think anyone should really give up hope on it. Just keep pestering your rheumatologist and asking questions, and don't settle for having to put up with drugs not working for you (although some do take 3-6 months each to really figure out if they are going to).

[Hidden]

Hi I too am another who is doing really well on 2 DMARDs - Hydroxichloraquine and MTX by injection. It's taken almost a year to get fully normalised but I really do feel I'm now in full remission on these two drugs. I'm presently staying with my sister - who hadn't seen me for a year, and she and her hubby have both told me I look like a new woman compared to when I stayed with them this time last year just before diagnosis when I couldn't even do up the zip on my boots or shake people's hands.

I agree with Polly'a point about work and rheumies - and also GPs. My GP asked me last week if I was able to use my hands properly again now for work so I said yes and she said "well that's the main thing!". Not sure what I think about this - it is the main thing for me because i'm an artist, but I guess if people are able to keep on working they are going to be happier by and large and cost less money as well as being less depressed? although I certainly don't think people who are forced to work in physically demanding, low paid jobs with RA would agree? Some are just to I'll and in too much pain to be able to cope with the work place - and I'm very relieved that so far I'm not one of them - thanks largely to the drugs I'm on I believe. Tilda

[mistymeana]

Thanks Tilda. I need my hands too as I qualified as a reflexologist last year and would dearly love to get to the point where I can give up the day job and just spend my time helping people. I'd say fingers crossed a change of meds will allow that but I can't cross my fingers at the mo :). So virtual fingers crossed.