Rheumatoid/psoriatic arthritis

daveyjoe · 17-10-2016 1:21pm #1

I'm 30, male and reasonably active.

I've been having joint issues for a couple of years. It started with my knees then my elbows and recently I've been noticing it in my right hand. A couple of years ago I was doing 5-a-side soccer twice a week, now I can't play at all because my knees are in too much pain. I'm limited to doing exercises which don't put much stress on my joints.

I had an appointment with a public rheumatologist a couple of months ago. He basically just did bloodwork and asked me about my symptoms. My follow-up appointment is in 6 weeks from now.

Since I've started noticing it in my hands I've become very frustrated because I'm typing for a lot of the day and it's a constant reminder of the condition and how it has gotten worse. It's beginning to really stress me out as I'm just waiting for the follow-up appointment and doing nothing to get this fixed.

Are there options open to me to speed this up? I don't have health insurance but I'd be willing to go private and pay out of pocket because this is really effecting my daily life and I just want to feel like I'm doing something positive rather than waiting on the sidelines.

*eadaoin · 18-10-2016 9:05am

I was diagnosed with RA at 31, like you it crept up on me and I didn't suspect arthritis until it got very bad. By the time I went to see my doctor I was in so much pain every day I could barely walk in the mornings, I thought it was just stress and would pass on.

Doc did the blood tests for me and suspected it might be RA. I had no health insurance but I was in so much pain I couldn't handle the waiting time on public lists so I went private. Best decision I made. The rheumatologist was able to diagnose it from the bloods my doctor had done and presentation of symptoms along with my medical history. She did further blood tests that confirmed it. But she diagnosed it on my first visit to her and basically started treatment straight away, after about six months on the medication it had really started to help and things are much better now.

Price wise, it's been expensive but for me worth it. Initial visit to rheumatologist was about €170 I think. Now I see her every 6 months and it's €130 a visit. Prescription medication costs roughly €25 a month. I have to have blood tests and visit my GP every three months which costs €80. If I have blood tests without a visit to GP it's €35.

I'm lucky that my RA is mild, if it was worse I might have to see the rheumatologist more often and pay for much more expensive medications.

The waiting lists for public health are extraordinarily long for a disease that needs to be treated ASAP. The longer it goes untreated the more time there is for irreversible damage to happen. I have a close friend with RA much worse than mine, they're unable to work and so are on disability with a medical card. It can be very difficult for them to see their rheumatologist outside of the scheduled appointment times, which is awful if they're having trouble with a new medication or are having a bad flare and need some extra help.

So there are pros and cons to it all, and I guess it depends personally on what you can afford. 6 weeks is not a huge amount of time to wait, but I understand if you're in pain that it may feel like forever. You could be waiting 6 weeks to see a private rheumatologist and wait for further tests too, it depends. You could look at the option of starting treatment with a private rheumatologist and then moving to the public system once you get the diagnosis and are on medication. You can ask your GP for a course of steroids to help you keep going while you're waiting for that next public appointment. Remember that it takes a few months for RA meds to work anyway, and sometimes it can be trial and error until you find something that works for you.

In the short term ibuprofen can be a great help to reduce the pain, if you are able to take it, talk to your GP. Heat helps too, don't let yourself get cold and take hot baths or long showers when it's bad.

0lddog · 18-10-2016 2:15pm

As *eadaoin says, there are pros & cons to both public & private.
Unlike *eadaoin, my experience is that the public system is frequently way superior to the private system for long term issues such as RA.

If you get a flare up, go to your GP while its going on. I'd expect that you will be rewarded with a script for some steroids ( which generally are a huge help )

Take photos and /or video clips of flare ups. Sometimes its useful to have a record of whats been going on.

daveyjoe · 18-10-2016 3:35pm

Thanks so much *eadaoin and 0lddog. My GP is out on maternity leave at the moment but I guess I could go for an appointment with her replacement.

I don't really seem to have flare ups, it's pretty consistent. Sometimes are a bit worse (mornings) but not a huge difference.

@*eadaoin: Are you on DMARDs? How much Ibuprofen are/were you taking? I'm currently taking 400mg in the morning and generally 200mg in the afternoon/evening (more if I think I need it). I'm considering taking a bit more Ibuprofen.

0lddog · 18-10-2016 5:10pm

FWIW I found Ibuprofen useless & gradually figured out that there was an association between certain foods and flares.

This left me with few flares but constant aching and fatigue. Steroids were are a temp solution to this and a great boost for the morale.

daveyjoe · 18-10-2016 8:47pm

I'll book an appointment with the doc tomorrow. You are talking about Corticosteroids 0lddog, yeah? Do you just take tablets or some sort of cream? Is a Doc likely to prescribe these just based on symptoms and without a diagnosis?

0lddog · 18-10-2016 9:18pm

Have you come across :

http://www.arthritisireland.ie/assets/70/687A074B-F0AF-9243-CB15B3F738CF993F_document/Living_with_RA.pdf

There is a reference to steroids on P.15

Wonder will your GP write you up for some

Mine wouldnt ( even though blood work gave a clear RA indication ) until one of the consultants did, ever since she is happy to if needed.

Lots of good stuff over at http://www.nras.org.uk. ( they seem to be well tuned in to the crushing relentless fatigue that many suffer )

*eadaoin · 19-10-2016 8:13am

daveyjoe wrote: »

Thanks so much *eadaoin and 0lddog. My GP is out on maternity leave at the moment but I guess I could go for an appointment with her replacement.

I don't really seem to have flare ups, it's pretty consistent. Sometimes are a bit worse (mornings) but not a huge difference.

@*eadaoin: Are you on DMARDs? How much Ibuprofen are/were you taking? I'm currently taking 400mg in the morning and generally 200mg in the afternoon/evening (more if I think I need it). I'm considering taking a bit more Ibuprofen.

daveyjoe yes I'm on a DMARD called sulfasalazine and it's changed my life. It took a good 6 months to kick in fully, but once it did it worked very well for me. It's on the mild end of the RA drugs, but for now my RA is mild so I am lucky. I take six pills of it a day though, so it's a bit of a commitment and I have to use one of those AM/PM pill boxes to make sure I don't get confused.

I don't take ibuprofen now unless I'm having a really bad flare, which is rare enough. It usually helps me to ease up the whichever joint is stiff and eases the pain a little. Before I was diagnosed I was taking 400mg about 2 or 3 times a day depending on how bad the pain was. You need to be careful with taking it so much because it can hurt your stomach and cause ulcers, take as little as you can and always take it with food.

You'll probably eventually learn about what RA flares mean. Most of us will have a baseline level of pain, whether it's a small amount or a lot of it, and every now and again we will get an RA flare in a joint or a couple of joints or sometimes just a flare all over where suddenly the pain gets a lot worse, the joints affected stiffen up and become difficult to use properly and you might feel exhausted or like you have flu, you may sometimes notice swelling in the painful joints too.

Flares can last anywhere from a few hours to a few months, depending on the activity of your RA. If a flare is prolonged it's important to talk to your rheumatologist about a medication change or possible course of steroids to bring it back under control.

For myself flares typically last about 24-48 hours, although sometimes for a week or two depending on how bad. My hands, wrists, feet and knees are the most likely to flare and swell up. Heat, ibuprofen, hot baths, and lots of rest will usually get me through it. You can also get ibuprofen gels to rub directly onto sore joints. Bracing joints with compression bandages can help too.

You'll come to learn what triggers flares for you too. Personally I don't have any food triggers at all but instead get flares from activity, stress, lack of sleep, being too busy, illness, being cold or cold weather, and lack of rest. Basically I find I have to live a fairly peaceful and warm life to avoid flares. If I know I'm going to have a busy day I try to schedule a quiet one after it so that I get a chance to recover. I have to make sure my weeks are fairly spread out in terms of busy/quiet periods and try to keep a good balance whenever I can.

Your GP might be reluctant to prescribe steroids until you get a full diagnosis and treatment plan from your rheumatologist. You could also call the rheumatologists office and ask if they can put you on a list to be called if there are any appointment cancellations.