I was diagnosed RA in June last year after a few years of palindromic rheumatism. I currently take methatrexate and hydroxychloroquin, tried increasing metha but made me very ill and was put on sulfasalzine but made my flares worse!
I have just recorded my first das score of 5.97 and now have to wait 4/6 weeks to record another high score with a nurse or doctor before I can start screening for the biologicals. They don't want to give me steroids to mask my symptoms and I am living on pain killers! I understand the criteria for getting in to biologicals but I'm so frustrated as its affecting everything, my job, my two young children and my husband who is wonderful but it's so much extra pressure on him when I'm laid up with a bad flare like this evening, both knees are agony one is massively swollen and I can barely walk. I am currently sat on my sofa in floods of tears feeling very sorry for myself, this is most unlike me as I'm am desperate not to let RA rule me but at the moment it does!
I don't know how how I'm going to get through the next few weeks!
Has anyone else experienced a long wait for biologicals?
Sorry it's so long (and any spelling mistakes) thanks for reading!
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Fis76
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You will find good support here from people who are currently in the same position as yourself or have experienced it at some point.
I started on various DMARD'S which didn't work for me and was put forward for Biologic treatment in Nov last year. It took until Feb this year to actually start the injections. This was largely due to them applying for approval and doing the various blood tests/x rays etc required before starting. I think the time varies from hospital areas.
Hopefully you won't have to wait too long. It's not easy when you have young children and you are in pain.
I wish you well and hope the pain eases soon for you x
Sanbanan I think your right the waiting time for meds must vary depending on the hospital you go and your rheumy. Maybe I was lucky cause I have never had to wait so long before I got any treatment sorted but I have also realised that maybe I am lucky or maybe I have just been such a pain that my dr's are ok with sorting out any issues that I have quickly. Anyway I hope your new meds are working for you. Look after yourself.
Yes, took about 6 months from nurse specialist saying she would refer me to Biologics clinic to actually starting Enbrel. But as you were only diagnosed less than a year ago you have managed to find quite a fast route. Most people seem to have to wait much longer, so well done!
Matilda it took you six months before you were put on Enbrel. I was sorted with my biologics within a couple of weeks. It makes me really sad knowing that so many people are waiting to be put on these meds. No wonder so many patients are suffering with ra.
fis76 I think maybe things have changed since I was first diagnosed with RA. Cause for me I only had one assessment when I first started biology. All I can tell you is that recently being an nhs patient has become very difficult. I was supposed to go for a ultra scan at my Drs today but in the end I never had it done.
Anyway I have found that maintaing a good relationship with my Drs secretary has helped me do things like see him quicker.
I'm sorry to hear your struggling at the mo. Think some Drs do have issues giving steroid injections but having one once every so often if your in pain should not cause you to many problems
Thank you for your replies, it's nice to hear from people who really know what it's like dealing with RA,
The reluctance to give me steroids is that they are trying to get me to the biologicals but boxes have to be ticked and the steroids may lower my score and cause more delay.
I have even tried accessing the titrate trial a study looking all aspects of the differing treatment methods but my first score was too low now it's too high!
I was diagnosed in August last year on my first referral to Rheumatology after suffering with what I and my GP initially thought were torn hamstrings from over exercising.
Looking back now I realise I had been experiencing pain in my fingers for several years before this.
From my first GP visit with the ' hamstring' issue I very quickly developed explosive polyarthritis in my jaw, back of my skull, hands, fingers , wrists, knees, and feet.
Was given large rescue doses of oral steroids ( Prednisalone) which gave me steroid induced Diabetes ( grim experience but all cleared up now)
Once I was less disabled my GP started a rapid decrease on steroids to give the Rheumatologists a clear picture of what they were looking at, a vile and nasty time which you are experiencing now ( total sympathy)
Then the DMARDS started which I won't bore you with as sufficient to say my liver played up and I was allergic to some ( again a grim experience)
To answer your question regards Biologics however, I was told I would go on them in November and by December/Jan I had accepted delivery and had the Enbrel nurse round and had taken my first injection. 5-6 weeks approx.
Am now off steroids completely just, Hydroxychloroquine, Enbrel , Tramadol for flares and Naproxen. Am also allergic to Hydroxy so am on an antihistamine for that.
I felt immediate benefit from the Enbrel but still flare up every ten days or so in my wrists but am so much better all round that I feel I am in control mostly and have gone back to work in a very physical demanding role even though it took me 11 months to get there.
Sending all good wishes and positive thoughts for your recovery and hope you get relief very soon.
Tell that husband and those kids that Mummy will be up and running soon! she just needs a bit of TLC for a little while longer.
Fis I don't have to much time to talk about it now but I would highly recommend looking at your diet and taking a functional medicine approach to your ra whilst waiting for meds. The main reason why I say this is because I know It has helped me and many others. I reversed a lot of my autoimmune problems through diet. I have also followed a lot of what someone called the medical medium and Michael gregor have to say about what we should and should not eat.
you may want to try and gently push your drs into hurrying up this biologic process or if your that desperate call your hospital today and tell them that you really need to be seen by the dr.
i have def found that if i don't push myself into getting seen by these drs then i would waiting forever for an appointment but on the other hand like i said i think i am lucky cause i was always seen very quickly by my rheumy.
if your really suffering call your hospital today, no on should have to be in pain or suffer like this. Look after yourself yeah.
ps i was on humira and then golumumbab. Humira worked for me for a number of year, Golumumbab was not strong enough I should of really been on Enbrel and now i am no longer on biologics.
I went through exact assessment. I couldn't take steroids while waiting for second blood test. But it was worth it for a few weeks as you need the second blood test to show you at your worst. I just got a call from my nurse saying I will get my first dose of rituximab in a week or so. Once that second blood test has been taking you can take a course of steroids again to see you through til you get the treatment. Hang in there! We have to suffer in order to prove how bad we are!
I am also waiting to be asessed for Etanercept. It was first mentioned in January. I wasn't told about reducing steroids for the assessment until I rang up to enquire about something. I am now worried as someone has just told you they compare blood results. I wonder how that works when my results never show how I feel, they are normal most times. It does seem to take forever and I am suffering with my knees too, not sure if it is the same as mine as mine is mainly the right one and not in the joint. I hope they let you start it very soon after your assessment.
Very similar story to me. Methotrexate and hydroxyquinoline worked for about 2 years. Increase in methotrexate gave me sore tongue and moth ulcers. Couldn't tolerate sulphazalazine with extreme tummy cramps. Had to tolerate 4/5 weeks of extreme pain with no steroids to get 2 DAS scores high enough to get biologic. However for me the end result has been fantastic and been on Humira and low dose of methotrexate for over 2 years and was back to pain free with full movement of all joints within 4 weeks of taking this biologic.
Still don't like injecting myself but well worth it!
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