How well do you cope?!

Lou001

Im 28 and was diagnosed with Psoriatic Arthritis around 2 years ago.

To be honest, I didn't take it very seriously when I first had the diagnosis. It was just a few pains here and there. X-rays showed inflammation at the bottom of my spine and in my hips, and I had some trouble with my knee, but that was it.
The rehumatologist were very keen to get me started on medication, but i refused to take it due to my age and the fact that the pain didnt have much on an impact on my daily life.

However, over the past 6 months things have gotten so much worse.
I struggle to get out of bed on a morning the pain is that bad.

My hands and wrists hurt, my legs, knees, back and neck.
All of my current MRI's are clear, apart from some swollen lymph glands in my neck (the drs said these are reactive to my psoriais and arthritis and arent cause for concern)
My CRP level is currently 29 (I'm told this is high?!)

I have been given sulfasalazine (refused Methatrexate as I would like to start a family in the near future)

I am so scared of taking the sulfasalazine, I have read some real horror stories regarding side effects and close links between the drug and cancer!!

Im starting to feel very depressed, this is really affecting my life now.
Im always in so much pain and feel very tired.

How does everyone else cope, are you on meds? I'd really like to hear from others with the same / similar conditions.


Thanks for reading.

barbara12

Hello Lou001 and a warm welcome from me
Sorry I wont be much help I have OA at the min but just had a MRI,but I really do feel for you being so young, but the good news is treatment is moving on all the time, I am sure someone will be along very soon with more advice for you...

Scarlet

Hi Lou001,

Sorry to hear things aren't so great for you at the moment...I'm sure nearly all of us here have been in a similar situation at some point. I was diagnosed with rheumatoid arthritis nine years ago at the age of 20, and I really struggled with my wrists knees and feet, there were days when I didn't want to get out of bed it was so bad, so I really sympathise with you.

Please don't scare yourself with horror stories. Everyone here is taking a variety of drugs so we can all share our experiences. I took sulfasalazine when I was first diagnosed and I didn't suffer any side effects. I don't know about links to cancer but it's just my personal opinion that doctors wouldn't prescribe medication that has definitive links to cancer.
I came off the sulfasalzine as it did improve my condition but not dramatically, so I started methotrexate which has been amazing, although I know that's no good if you plan to have children (which I don't).

I'd suggest maybe talking through your concerns with your rheumatology nurse if you have one. Hope things pick up for you soon, please keep us posted :-)

Boomer13

Hi Lou001;

I have PsA too but I'm older than you at 48. Mine started eight years ago in a few joints, then four years ago spread to all and my spine. Looking back I think I had a few episodes in my teens and always have had trouble recovering from exercise.

I'm not coping very well right now, I'm very depressed at the moment but I've had a good, long history of exercising with walking, chair yoga, tai chi and swimming depending on what I was capable of at the time. For example, I couldn't walk or swim when hips or back were flaring but did chair yoga instead. Eating well with huge amounts of vegetables/fruit, sticking to a regular routine all have helped me. I also learned mindfulness meditation but have lapsed in my practice lately. I can't work or do much housework which is still a huge problem. I have found taking ridiculously frequent rests and naps is essential, even if I'm having a good day. Get a really good bed and try to maximize your sleep quality.

I also have a couple of pets; cat, dogs and a fish tank that improve my mood immensely and provide comfort and relaxation. I also have a wonderful OH who does a lot of the work for me.

I generally think you must remain flexible in what works and not feel like you have failed if something doesn't work for you, like physio. I can't work with the physios in my area; their approaches make me more painful. I believe that every day you can start over at whatever it is you are doing. There are many small things you can do the cumulatively will help you cope better. Now, I need to take my own advice

I take triple DMARDS for my PsA and they have helped somewhat. These are Methotrexate, Sulfasalazine and Hydroxychloroquine and I'm going to start a biologic soon. I'm not afraid of a cancer risk with these medications because they will hopefully slow down the rate of joint damage, which I am much more afraid of. Having a chronically stimulated immune system also increases your risk of cancer. It's a tough decision but I'm comfortable that I made the right one for myself.

Best wishes,
xxAnna

dreamdaisy

I have PsA but because it went un-diagnosed for five years (and therefore I started the meds far too late) I now have OA and fibro to boot. Any form of arthritis is progressive and degenerative and the auto-immune ones require the meds to at least slow the progress. I guess I am 'lucky' in that I have a long history of auto-immune ill-health so never baulk at any meds, mainly because the ones I needed as a child hadn't been invented. I never worry about side-effects because to my way of thinking they are not guaranteed (the manufacturers are covering themselves) and they won't necessarily turn up.

I am in my twelfth year of taking sulph, and my fourth year of injected meth and humira. My PsA is very well controlled but of course they do nothing for the OA (which is currently running riot). How do I cope? I do because I have to, it's not rocket science. I have around forty affected joints and have had to make many changes to my life (all resented at the time but I have learned to appreciate the small benefits they bring) .

This is something that is not going to go away or improve. You say you want a child so surely it's best to get yourself into the best state possible to cope with the demands of said want. What your body needs is something to combat the arthritis so you can get yourself into the best possible position to do without them whilst you are pregnant. DD

stickywicket

Hello Lou001. I don't have PsA. Mine is RA but there are a lot of similarities and the meds are one of them. So, alas, are the pain and tiredness.

It seems as if you have managed to get by so far without medication but the recent flare has changed all that. It could be a change for the better. Many people come on here afraid of the side-effects of the medication. Few consider the 'side-effects of not taking the medication. Your disease needs to be under control. The meds are the only way of dealing with that.

If we read the list of side-effects of virtually any meds for any condition they can be very scary indeed. We have to remember that manufacturers are bound to list any possible ones. The vast majority of people will not get them. I'd already had breast cancer ten years before I started to take methotrexate. That was about 14 years ago and it's never returned.

How do the rest of us cope? By taking the meds. I couldn't personally contemplate not taking them. I doubt I'd be able to get out of bed at all.

Have you thought of having a word with our helpline people? They're very good listeners and, if you wanted to try to talk over your worries and fears, they would give you all the time you need.

Lou001

Thanks all for your replies, I guess it would've helped if I had mentioned that I also suffer with health Anxiety and have done for a long while, which probably aggravates my condition due to the stress of worrying.


One of the main reason for fearing the sulfasalzine, is the fact that it suppresses the immune system.
I don't want to be catching all sorts of bugs, surely that's not going to make me feel much better than I do now.

Do the drugs you guys take affect your immune system much?!

Stickywicket - I haven't tried the helpline, but I will look into that. Thanks

stickywicket

The whole point of the meds we take is to suppress the immune system because tje whole cause of our problems is an overactive immune system. Ours don't just attack the bugs that they are needed for. They also attack our own cells. Hence the need to dampen them down.

Those of us on any immunosuppressive meds should get a flu jab every year to protect against it. We should also take sensible precautions re hygiene, washing hands, using alcohol gels etc but I don't think I get any more colds, bugs etc than those around me. I have just had a nasty bug - my first for years. There was a day when I felt very ill indeed but I would take that over an RA flare any day.

I do think you would find our Helpline people very useful

Boomer13

Lou, I take MTX, Sulf and Hydroxy. I was afraid of infections too but I have not had any I practice good hygiene at home and was really fussy at first, but now I'm more relaxed. Still, I stay away from people with viruses and have a yearly flu shot. I've had no problems and I take all three DMARDS

Sticky's right about the immune system being overactive. DMARDS seem to just take it down a little, but it's an individual thing and we all react differently. Some people can't tolerate the drugs at all. You should talk to your doctor about it. It is very important to go for regular bloodwork to identify any problems, but I just don't worry about it anymore. I worry more because my illness is still very active despite DMARDS. That scares and depresses me

dreamdaisy

Oh, a health anxiety too? No wonder you are stressed.

Sulph is a Disease Modifying Anti-Rheumatic Drug (DMARD) so of course it suppresses the immune system. It has to because an auto-immune arthritis (of which there are close to 200 kinds) is triggered by an over-active immune system - it fires up at the slightest provocation but who knows what these provocations may be? They vary from person to person.

I am immuno-suppressed times three but because I understand the risks I am very conscious of hand hygiene, my handbag is stocked with hand gel and anti-bac wipes: I no longer care about the odd looks that may be fired my way when I use a wipe on an escalator or wipe plus gel on tables and flatware when eating out. If I do catch a bug then I stop the meds for a week or two (on the advice of my hospital) and get myself sorted before resuming them. I don't get properly ill that often (I don't count the arthritis etc. as being ill) and ensure I receive a 'flu jab each autumn; when one is immuno-suppressed that is essential. DD

Starburst

Welcome to our little corner on the web! Glad you found us, although it goes without saying that I'm sorry you've had to join this 'club'.

I'm 26 and was diagnosed with RA nearly 5 years ago, so similar to your type of inflammatory arthritis. I take a lot of medications; injected Methotrexate, Leflunomide (similar to MTX) and anti TNF injections called Humira as well as an anti-inflammatory Celebrex and painkillers (codeine and paracetamol). I initially battled with taking medications; sheer panic about long-term side effects particularly with regards to fertility.

The honest truth is that for me, the effects of the condition bother me enough that I risk the side-effects to have a better quality of life. Despite my load of pills and injections, I suffer very very few side-effects and the ones I do suffer from have very limited impact on my day-to-day life. Medication is a very personal decision though. At the end of the day, you are living in your body. Writing a list of pros and cons really helped me, as did talking it through on here, with the helpline people, with my family and with all the people involved in my treatment. I do advocate reading online about medications but read with caution and with a critical mind. It is a legal duty to list every reported side effect. All bodies are different, you cannot predict how well you might tolerate meds, so keep that in mind.

I used to suffer terribly with anxiety. I have (had?) OCD, so I know it's not as easy to say "don't worry!". Have you had any counselling or CBT or similar? Therapy certainly helped me come to terms with my 'new' life with RA. You can do CBT courses online too.

How well do I cope?! It varies from day to day sometimes. Some days and even weeks are easier than others. Being kind to myself helps and not berating myself for being too tired to do something. Pacing myself helps. I prioritise all the things that must be done and the rest has to wait. So, my home isn't always as clean as I'd like and I don't cook from scratch as often as I'd like but I don't burn myself out to easily.

Physio and regular exercise is so so so so important. That said, I cannot stress the importance of seeing someone who knows inflammatory arthritis helping you make a personalised exercise plan. You need to know to rest when your joints are swollen but gently stretch when you can. The word 'exercise' used to freak me out but it's about keeping moving e.g. get up and walk around the room once an hour, rather than go for a gentle jog.

Being immunosuppressed is not as scary as it sounds, I promise! Even on a triple combo of immune suppressants, I'm not that bad. I do keep away from people with stomach bugs and fluey colds, if possible. A good diet and keeping to good hand hygiene (especially if you've been on a train) helps.

Sorry, this ended up a lot longer than I thought, I hope some of it helps!

Best wishes,
Sophie

Lou001

Thank you all for the replies. It's much appreciated.

DaveOB

Hi Lou

I was diagnosed with psa when I was 30 (now 37). Like you I was worried about the meds, but I also was getting joint damage so felt I had no choice but to start taking something. I currently take leflunomide and enbrel and I would be lost without them. We also had the stress of trying to have a family and coming off meds etc, it is rubbish!

Hope you start feeling better soon

Dave