Newbie, very confused..very long story.
Posted , 6 users are following.
I was diagnosed with PA in November 2016, but am still waiting to have this confirmed by a rheumatologist as the waiting list is ridiculous. My GP is convinced I have it though. It started with an odd stiffness and pain in my left ring finger which I noticed mostly when putting on socks or opening jars, chopping veggies etc. The stiffness and pain would jump around to a few other fingers over the next few weeks but it never left the orignal finger (until literally this month!). Since then, I have experienced very sharp, sudden, but thankfully intermittent pains in my fingers, usually the end joints but sometimes others. This can also be a burning pain sometimes with skin sensitivity.It comes and goes within minutes. I have not had any significant swelling- sometimes I think a sore joint might be a little bit swollen but it is so tiny I really cannot tell. I have noticed the end joints on my right hand are a bit larger than my left, and appear to have rotated out, but I'm not sure if that is PA or just..life. Moving on, the pain then decided to settle into the top of the feet and my heels, most prominantly in my left foot. Especially in the morning. Sometimes my achillies will go as well. My left hip is also sore- especially in mornings or if I walk any less than 20mins, and then sit down again it tends to lock up, as though I need to walk a bit more to warm it up. I am no longer working as my contract ended and the pain in my hands has decreased significantly since then (it was computer based), but my heels and hip are the same. I've had Xrays of my hip/SI (normal) and 2 rounds of blood tests (all normal, even CRP). I am at a loss because I feel as though many other people have it so much worse than me, I am not crippled, the pain is rarely so bad that I cannot function, I feel like surely there has been some mistake! And the fact that my bloods are normal..sometimes I feel like I have made a big fuss out of nothing and that this is just part of aging (I am 24). But my doctor seems convinced. I am scared to go on methotrexate because I feel as though I am not sick enough to justify taking such a scary drug. I don't have to start treatment until I see the rheum at least. I am very lonely and confused about all this, but thanks for reading.
Megan
0 likes, 8 replies
robert271163 megzlilpegs
Posted
Certainly sounds like PA. I hear your concerns re going on to Methatrexate however this disease will take over if not controlled. Mtx is one way of slowing it down. At your age you have a long time to go on and live with the disease, so do what you have to do to control it before it controls you.
Its can be a long road on medication to find the right combination that works for you, so the sooner you get started the better.
megzlilpegs robert271163
Posted
Okapis megzlilpegs
Posted
Hello Megan - it really does sound as if you need to start a disease modifying anti rheumatic drug DMARD for short!
The advice for treating PA is to start agressive treatment as soon as possible to get the best outcome - with a DMARD. If you have not done so already look up arthritis research uk and Philip Helliwell - a doc with a special interest in PA.
Have you been waiting for a outpatient appointment since Nov 2016? If so your GP needs to object and you, yourself can contact the hospitals PALS - patient advice and liason service and point out that you have now been waiting 7 months for treatment for a chronic and progressive disease, which it is - as you not doubt appreciate. Having given you the diagnosis they have left you without treatment!
Not good enough. Is this a smallish hospital? Your GP could refer you to a larger teaching hospital if necessary? Hope there is one handy.
I now attend a specialist PsA clinic well out of the GP's normal referring practice. It would take an earthquake between me and this hospital to make me attend the local hospital that has a very limited team of rheumtologists.
I take it you are taking anti- inflammatories - prescription variety and pain killers?
Your GP can see to this. My fingers are a bit of a mess now after 17 years of PsA but when I was still working I used voice recognition software - made a huge difference. I use Dragon Naturally Speaking Professional - a old version but I think there is better software around these days that is not quite so expensive! Used it for powerpoint and excel.
There's an internal battle that takes place when you are diagnosed with PsA. Its like a fog round your head, youre so tired and its demoralizing not to be able what you did before but there will come a point when you will manage to get your head round the disease and recover quality of life. But not without treatment!
I'm afraid in todays NHS, it pays to be persistent, insistent and a pain in the neck. Ring the rheumotology department and ask when you will get an appointment. At least then your GP has more information and can take action. Then ring your PALS. I once in desperation rang them after an appointment (not rheumatology) was cancelled 4 times. It worked! I had a phone call shortly after offering an appointment the following week. When I reached the doc, he grumbled at me! I was unrepentant. What about all the others that had been dumped 4 times, as it was complete lists that were abandonned - going to the back of the queue each time. The hospital thought so too, he had to put on extra clinics to catch up!
So look after yourself, treat yourself gently and use pain pacing - look up a scottish site moodjuice on pain pacing. It will help - feels a bit bizarre at first but it works! But nag the NHS....when will you have an appoitment first step
megzlilpegs Okapis
Posted
Hi, thanks for replying!
I'm actually from Australia so I'm not sure what sort of differences there are between our healthcare systems but yes I have been waiting for outpatient with a rheum since my first ever appointment with the GP about this- Nov 16. Unfortunately the city that I live in is very small and we have only 3 rheumatologists, only one of which consults publicly. I am lucky in that he is head of the department so should know his stuff..but terribly unlucky in that the average wait time is 10 months (despite being traiged as to be seen no later than 31 days). There is also only a single public hospital- had I known this was going to be such a wait I would have travelled interstate as I have family I could visit with to make the trip. I will be suggesting this in the future if the rheum is always going to make me wait this long.
My GP is furious, has made numerous phone calls and sent many letters but her hands are tied as she is hesitant to start DMARD treatement without a rheumatologist on board. She has said however that she will go ahead with treatment if I have heard nothing in another 2 months or obviously if my symptoms get worse. They have been very stable and with no swelling she isn't too worried about permenant damage.
Yes,I am taking meloxicam a few days a week which does help. I've also just been prescribed celebrex but am yet to fill the script.
Thanks for the suggestion I will certainly look into it, I will certainly keep nagging the outpatient department!
sheila65847 megzlilpegs
Posted
Hi Megan
welcome! You will receive lots of help and support on this site. It seems that you have received good advice already. I can only add to what's already been said; push, push, push to see a rheumatologist as they are the experts and can confirm whether it's PsA or something else.
You are young - the earlier it's diagnosed and treatment begins the better as aggressive treatment will prevent your joints becoming deformed. Treat he horror stories about methotrexate with common sense as it's a fabulous drug for the majority of people - unfortunately just developed drug induced hepatitis whilst taking it. You must make sure you get your bloods checked every 2 weeks initially to ensure there's no adverse reactions. This is what I did so the hepatitis was identified early and ceased immediately.
You make no mention of psoriasis? Do you have/have had psoriasis? Also what are your nails like - any loss of nails or pitting?
any questions - fire away, it's a big deal to accept you have a chronic progessive disease eespecially at your age. Good luck and push for that referral.
megzlilpegs sheila65847
Posted
Hi, thankyou for the reply!
Yes, this is what my GP tells me- that is is *good* that I am young and not in a disabling amount of pain because it means I am more likely to have good outcomes with treatment. It feels a bit like blind faith, but I will have to trust it.
Silly me forgetting the psoriasis! I have had very mild and infrequent psoriasis since childhood (though never confirmed by a dermatologist, my old GP told me what it was and treated with cortisone creams etc). I typically get inverse psoriasis, though recently have had a new sort of 'dotty' type on my elbows and hips. As for nail pitting..not really. I've had the odd 1-2 pits (like pin pricks in the nail) every now and then but nothing out of the ordinary.
Thanks so much!
ruth010 megzlilpegs
Posted
Hi Megan, sorry you've been going through so much, I know how confusing it can be to have all these different aches and pains coming and going, and never knowing where the next ones going to pop up. It can be confusing and frustrating to feel OK one day, and then like hell the next.
However, as the others have said it is important to see a rheumatologist when you have so many different joints suffering issues. The fact that they haven't swollen yet means you may have an opportunity to prevent it or slow it. My blood tests have always been fine, and the other tests they do like chest x-rays and lung function have been fine too, but my joints continued to get worse over the last few years. I'm now on methotrexate and sulfasalazine.
The fact that your GP has picked up on it is great because the sooner treatment starts, the better. My GP just fobbed me off even though I had psoriasis and swollen joints. All you can do is try it and see what happens. If it helps great, if not then you try something else, but please don't be afraid to try, the hospitals do keep a close eye on your blood tests and do follow ups to see how you are doing.
I hope you get your appointment sorted soon, it is well worth speaking to a specialist. Let us know how you get on.
Ruth.
donna1961 megzlilpegs
Posted
Hi there, I'm not sure I'd be happy with just a GP diagnosis and treatment with DMARDs. Personally I think you need to have a specialist, e.g. Rheumatologist, make the diagnosis. There should be blood tests, X-rays and close history taking before prescribing such a powerful drug. I've been treated for similar symptoms to you for years and years with steroids. The GP diagnosed it as polymyalgia rheumatica. I've now got lots of damage from the steroids but it turns out it was pointless as I don't have PMR, it's PA. please get full and specialist advice.