Consultant said "you were diagnosed too early"

Back in June with my 1st rheumy app all the bloods said something was wrong & had some sausage fingers but no pain(felt bruised )Consultant said back then,I could start Hydroxy if I wanted!!!! Off to the docs,he said the same So I made the decision to start on it. Two weeks later letter from consultant telling me not to start Hydroxy.(because I only have one good eye)it affects your eyes.

So I have suffered all summer only meds taken are naproxen (not done anything for me)

2nd app yesterday with hands like boxing gloves(her words)& so painfull & so

stiff & so tired ........you all know what I mean...tells me I was seen too soon,not showing enough signs.

The good news(if you can call it that)I now have been diagnosed with Psoriatic Artritis..

start on Methotrexate 15mg with all the extras(folic acid,blood tests,flu jab,pneumococcal jab)So I am glad I will start to get some relief but also very hesitant with this drug.

The consultant was starting to explain the ups & downs with this med when I told her I have been on this site since June & have learnt a lot .She said there's no point me being on here as its for RA not PSa A .

I must say I do sort of enjoy the conversations on here...I do hope I'm not an intruder lol.

I did google other sites but they dont seem as interesting as this one (please can I stay) Anne xx

P.S....its my birthday on saturday,so putting all this at the back of my mind till Monday's App with Doc and I'm going to have a very good night with family & friends drinking & dancing @ The Soul Suite (love Motown) xx

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41 Replies

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  • Hope you get everything sorted out and a very happy birthday for Saturday, you go girl and have yourself a fab night xxx

  • Thanks...just hope its not my last fab night xx

  • There are at least three other regular contributors with PsA on here. It is a very closely related and equally serious disease and the drugs are the same and there's a lot of overlap so feel free to stay around I would say. Happy birthday for the weekend. Tilda x

  • Yes, I agree the drugs are similar,but I feel I need to talk to people with the same disease ,I'm sure you can understand my anxiety just being diagnosed.

    I've learnt so much off this site though,maybe they'll post soon .Thankyou for your good wishes Anne xx

  • I can understand of course and there are good Psoriasis sites but why not stay in both places since there are people on here with PsA too? I often think I might be re diagnosed with it and try to keep an open mind as my rheumy told me to when he diagnosed RA. There are lots of people with PsA on the Living with Arthritis forum of Arthriris Care if that helps.

  • I think I'll just give myself a little time to ajust to the meds etc....

    plus I've only just seen this post,need to learn about a lot at the moment !!! (I'll get there one day) :))

  • I was originally diagnosed with RA in April but asked for a second opinion which came back with PsA. I've been told to start MXT too but am very reluctant although think I may have to soon as I am really fed up with pain. It would be lovely to not have pain as I haven't had a day without pain for more than 20 years. Clemmie

  • We do need to take the meds,surely they will get easier as time goes on,and hope we don't all have bad side effects(though I'm sure we'll have 1 or 2)keep in touch let me know how you get on with it all,as I said I'm at docs monday to arrange everything,as I work at school I would like to have the jabs in Oct hols (just in case have side effects)I'll let you know......take care Anne x

  • Please ignore all the reports from the unlucky people who can't take Mtx. I refused it for years until I was in so much pain I gave in - and I now realise how silly I was. It has been a life saver for me - no pain and only now and then the odd side effect - just a bit of nausea sometimes is a price well worth paying. Try it - you can always stop if it doesn't suit you - but look on the optimistic side - in a couple of months you may be pain free......Good Luck, Kathy

  • Thanks for your kind words, Kathy. I suppose that on here you really only hear the negative things but I will be following up with the doctor here and so will be starting MTX in the near future and will let you know how I get on. Clemmie x

  • Hi Clemmie, I hope you do start it soon, isn't it suppose to slow the process down That's got to be worth it. Anne xx

  • I am away next week but will see the doctor when I get back. I have a letter to give him from the rheumatologist in the UK and he already told me backin July that he wanted to prescribe the MXT so I now there won't be any problems with that. I just so don't want to start it!!!! Stupid I know! Clemmie

  • Thanks for that,I need a bit of positivity,as I go to docs at 7pm,plus after my hectic birthday weekend my hands are very swollen & painfull also tired.So I think thats probably the best time to go when I really need it .

    I'll keep you posted,Anne xx

  • Good luck at the doctors.

  • Nothing much to report,but I am booked in on Wed 10am for flu jab & pneumonia jab.........Then start the dreaded Mtx on Friday :(

    everything crossed for no side effects (you're next)ha ha Anne xx

  • Great advice & great positivity coming my way..:)

    (trying to drink all the wine in the fridge (only got 2 more nights)lol

    thanks Kathy x

  • PsA is one of the spondyloarthritis group of inflammatory arthritis. There are a couple of really good international groups for spondy that have some absolutely excellent info and really helpful folk. Even though the majority of the folk have ankylosing spondylitis, there are a big group of folk with other forms including a lot with PsA on both of these forums. you'd need to google to find them - if you google "ankylosing spondylitis forum" then I think both will come up on the first page of results - one is kickAS, and the other is the spondylitis association of america. Try them out, introduce yourself as having PsA and see how you like the responses you get. But, I'd also stick around here too, as this forum is great for the general kind of "inflammatory arthritis" issues for UK folk. I just think you would get more of the "detail" and specific help for PsA from either of those other ones.

  • Thanks,googling as we speak x

  • Hi lovingit

    My daughter was diagnosed last year with adult stills disease.i understand how isolating having a disease which isn't so common.I have stayed With this site because of the supportive comments on it.my daughter has struggled with her meds and now injects with Anakinra daily and 25 mg methatrexate once per week.

    She Continues on steroids and awaiting an MRI scan on her hip which has been affected we think by the disease.my real advice is stay on sites that are up beat but real as some sites I have found can scare you unnecessarily

    Good luck and take care:)

  • Hi enaid,sorry to hear about your daughter(I think there are a lot of diseases out there that we don't know about)but you are right,this site is certainly the best I have found.The people on here know what they're talking about,which in turn helps us deal with our problems.We're all in it together.

    Your daughter is very lucky to have a caring mum like you.

    Thankyou for your support & Good luck for the future Anne xx

  • Loving it, I know that you are right and if it was my husband I would be the first to nag him to take the medication! But it's bad enough being in pain without feeling/being sick as well. I know that I will give in eventually, it's just a matter of time. Good luck at the GP on Monday - you shouldn't have a problem with the flu and pneumonia jabs although I know sometimes you can feel a bit grotty afterwards. I had the pneumonia one years ago and it was fine. Also it lasts for 10 years (or it used to) so at least you shouldn't need another one of those for a while. I

  • Oops, I pressed "submit" by mistake! Was about to say, I look forward to hearing how you get on, on Monday. Clemmie x

  • Hope you don't mind me asking,but do you have Psoriasis.I'm a little confussed as my doc diagnosed me with RA in June off my blood results,as I have Rheumatoid Factor 160 units Positive,but when I researched PsA it said you dont have a Rheumatoid Factor with PsA.

    I do have Psoriasis (for the last 30yrs)in finger & toe nails doesnt cause any problems,but this is why they changed my diagnosis.The same meds are used just a differant label.Anyway stress free weekend (calm before the storm)

    I do hope I can deliver some positive news (no pressure then) Anne xx

  • It is possible to have both RA and PsA. Or to have psoriasis and arthritis without it being PsA. Its not quite true that the same drugs are used for both - there will be some meds that work better for PsA, and there is a different kind of progression of the meds they will try, so that makes it quite important to get the right diagnosis as soon as possible.

  • Well....one thing I have learnt over the last few days is...Just do whaterver I am told & take any medication I am given & hope they work because this disease is so complicated .

    But thanks for trying to explain to a newbie Anne xx

  • i have PsA and always come to this site. People on here always answer any questions and give good advise. So yes by all means look on other sites but you can always come here also. Wishing you all the best with your decsion.

    Chris

  • Nice to know others on here do have PsA(hadn't realised)and you're right it is a very friendly site,I will be sticking with this one might be needing some advice.Hope I'm like you & don't have any side effects Anne xx

  • have a great birthday

  • Thankyou so much,I intend to (it might be my last for a while) Anne xx

  • I am a Ps and PsA sufferer,welcome to the club. Have a Happy Birthday Lovingit.x

  • I feel at home now,there's quite a few of us on here then.!!!Just hope this Mtx works with not so many side effects,Looking forward to Sat even more now !!

    Thanks for the warm welcome Anne xx

  • Hi Anne, of course I don't mind you asking! No I don't have psoriasis. I was first diagnosed with Sero negative RA in April but as I live in the Middle East for part of the year, when I went back to the UK in August I asked for a second opinion because I think a lot is lost in translation here. The rheumatologist asked lots of questions, redid my bloods and X-rays and was sure that I have PsA even though I have no psoriasis yet. One of my sons does and my mum has another autoimmune disease (Antiphospholipid Syndrome) which he seems to think is linked to all this. Hope you have a happy birthday tomorrow . Clemmie x

  • Hope you had good birthday celebrations.....I know I must be starting to sound like the Poster Girl for Mtx, but please give it a try with an open mind. I refused it for years & when I eventually took it - it changed my life - I know it doesn't suit everyone - but if it suits you it is such a life enhancer. Even if you feel a bit queasy at first - try to persevere as I found most odd symptoms disappeared after a while. Good Luck and here's to your new pain free existance, Kathy

  • Sorry,still getting my head round this site,just replied on Clemmies.So I won't repeat myself......But thanks I had all my family round both days(very spoilt)xx

  • Just to let you know,Wed 10am booked in for Flu & Pneumonia jab......then Friday start the dreaded Mtx :(

    Fingers crossed no side effects ,keep u posted Anne xx

  • Good Luck - Just take the pills and forget them.I take them at bedtime - so if I do feel a bit "Icky" I'm asleep and don't know it!!

  • Good advice,& I'm taking them on Friday night,so if I'm

    "Icky" my Hubby can fetch & carry (it's called milking it):)

  • I still have a glass of wine every night with dinner - my rheumy is quite relaxed about it - fingers crossed you are one of the lucky ones who find that Mtx really helps - but carry on milking it until hubby catches on!! Kathy

  • This good advice is just turning into Fantastic advice 'wine every night' whoop whoop lol Anne xx

  • On refecltion maybe go easy on the vino at first just in case it does make you feel "off" in combination with Mtx - but I'm sure you'll be browsing the wine dept in Waitrose/Aldi/wherever before long! Tomorrow is "M"Day Go for it!! Kathy

  • There have been some similar comments about people who don't have RA being on here, I have it in a mild form.

    I suffer from Fibro as well as Osteo, Psoriasis and various other ailments and have found the site to be very useful as a lot of the treatments and how we have been treated by medical professionals, the DWP, et al have also been very similar.

    I have contributed to some of the forums and have found the information back has been helpful, I would hope that we don't have attempts made to exclude people just because RA isn't their major condition, we all have one thing in common, a long term degenerative illness and supporting each other is the most important contribution anyone can make.

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