NEW to Forum - 32 with Psoriatic Arthritis

jessie1

Hi All

I've officially been diagnosed with psoriatic arthritis for the past year.
I’m textbook if you like, had eczema as a child which turned into psoriasis as a teenager. When I was 19/20 my finger/toe nails went from lovely and long / strong to brittle and fungal looking, I’d been grown and cultivated in labs over the years and fungal was ruled out. Over the years I’d dealt with the psoriasis on my skin and the fluctuating growth / departure of my nail bed –(not sure if that makes any sense to you out there) but some months I have more nail bed on my fingers/toes then others :0S

I’ve been referred to a rheumatologist who started me on two tablets of naproxen 500mg (morning / evening ) – at the moment I’m happy just taking one a day (i only take the evening one when I feel that I’m too sore) – my main pain is in my toes /ankles and hands – wrists.
We also did a two week course of steroids, but I was so off having that (even if it did help)
I’m not 100% sure what foods are good to avoid / prevent stiffness ? can anyone recommend anything that has helped them ?
I’m taking cod liver oil and the naproxen , I have two young boys (10 and 3) so am very active with them so the exercise is there...
My main aim for this forum is to try and gain as much advice / experience so I can try and avoid taking too many pills (for now)
Has anyone experience and other things ? like tiredness, loss of labido ? because of this PA?
I dont know anyone with PA so any feedback would be brilliant for me

Thanks for reading this.

Jessie

kittendriving

Hi Jessie

Hope this works properly - only just joined and haven't a clue what I'm doing! I am 44 and diagnosed with PA last August and was told by my rheumatologist that they don't really know anything about it - how useful - not :? I don't know anyone with it so I have done my own careful research.

I was put on methotrexate and had to have a blood test every month to check kidney and liver function. I also had depression and was given tabs for that. Tabs to counteract the bad effects of methotrexate. Tabs for stomach cramps. Tabs for pain. Tabs for protecting my stomach from the painkillers. You get the picture! I woke up one day and thought no, I'm 44 and this is not going to get me.

After my research I discovered that your immune system lives in your gut so decided to go at it that way, stopped my tablets and started a gluten free diet. This isn't as hard as I thought - bread is the only thing that's awkward and within 2 days my stomach had gone right down, going to the loo was normal but the main thing is I feel much better ache wise also with more energy/less lethargy.

I also am trying a nightshade diet which is thought to improve the symptoms and slow the progression of the disease, although medics will say "oh, well there's no proof" but I feel better. The nightshade diet is no potato, tomatoes, bell peppers of any description. I don't stick to this as religiously as the gluten free (maybe 1 meal with potato once a week) as this would depress me again, denying myself something I like.

It's all personal but anything is worth a try so you don't feel like a crip and worry about the future.

Hope this helps and I would like to say it's nice to find someone else with PA!

Lindsey

dreamdaisy

Hello, I too have PsA, I began my symptoms in April 97 aged thirty eight but the 'right' label wasn't attached until October 06 when my skin obliged with a bout of P on my palms and soles. That, however, changed nothing in terms of treatment.

I was born with eczema and then developed asthma at the age of 7. This was in the days before Betnovate and inhalers and life was rubbish. It still is in some respects! I realise now that developing the arthritis was the next logical development but when it was starting I didn't know what it was. I didn't present with classic symptoms (my nails are fine, my skin too for the most part) but it went undiagnosed and untreated for five years, then the meds I was given were effectively too little too late I am now in a right mess. No matter, it can't be changed.

I'm on more drugs than you and they are doing their job of controlling the PsA but unfortunately they don't touch the OA which has come about thanks to the joint damage caused by the former. Preventing this damage is one of the most important roles of the stronger meds, so please bear that in mind. I am tired all the time, in pain all the time, and as for libido? That went years ago thanks to pain and tiredness.

If you can get the disease under control then you may well find that everything else improves. We are all different in how we react to the meds and it what helps, and there are many to try. For some lucky ones the anti-TNF treatments do lead to their resuming a more acitve and 'normal' life which must be great. As for treating it via diet etc well, you can give it a whirl but don't be too downhearted if little changes and the disease progresses. All forms of arthritis are progressive and degenerative, I have heard of remission with RA but not with any other sort. I began with one affected joint, now it's thirty eight. No matter, it is what it is and it will do what it will do.

Learn to listen to your body. If you are tired, rest. If you have a better day don't doo too much - always stop when you feel you can do more and that may help the better feeling to last longer. Adapt the way you do things so you don't waste too much energy, delegate wherever possible, and google the Spoon Theory. That is a graphic explanantion of how draining this disease can be and it helps those around you to understand matters better. I also like the gorilla in the house one. My gorillas and me get along OK for the most part now I've learned to live with them! I wish you well. DD

kittendriving

Hi dreamdaisy

Thanks for your reply posting and advice. Could I ask what meds you are on? I can't stand the thought of being on meds that mess with my other bits of body, ie liver, kidneys, so badly. They didn't seem to affect the pain or tiredness, although I still have no swelling apart from my feet. Also I'm not a big drinker but I feel it's controlling my life coz I can't do what I want to do physically anymore and then to top it off I can't drink. I know I'm not supposed to smoke either but hey, I may as well give up breathing if I have to confine myself to all these rules.

Call it denial but I don't want it to drag me down mentally. I have always been mega active, usually 3 jobs at once, renovating houses and running round after 2 kids. I don't work now as I am a full time carer for my husband who has been mentally ill for the last 2 and a half years so I have to be upbeat myself plus that was how my dad taught me to be - head down and press on!

Sorry if I sound angry and sorry for myself - I know I'm better off than a lot of people but I can't give in - I never give in! I'm due to go to a new rheumatologist next week and would like to go informed - are there better meds - did you have to try different ones - if you're not on metho what side effects do you have - etc etc.

Thanks, Lindsey

dreamdaisy

It was an answer for both of you but I'm happy to reply to you individually.

I'm on injected meth (15mgs), injected humira (40mgs, an anti TNF) and sulphasalazine for the arthritis. The humira has led to increased BP so I am now on two tablets for that. I take folic acid twice a week, and I am currently taking omeprazole (a stomach protector) as I need diclofenac at the moment (that is an anti-inflammatory, I've damaged my rib muscles ). I also take an anti-depressant to help me cope mentally and therefore better handle matters. For pain relief I use cocodamol 30/500 but I keep those to a minimum as I am fearful of becoming too reliant on pain relief and therefore running out of options. I spent last year weaning myself off oral steroids and that also means I no longer need the anti-osteoporosis med. I didn't begin meds until 2002, and had to spend a lot of time trying different ones before I found a combination that works (I use that term loosely).

Side effects? To be honest not many. Today is a very tired day, this happens once in a while after the meth (I did that yesterday) and usually in a humira week but that isn't due until Sunday (that's a fortnightly med). My hair has thinned a little but that doesn't bother me, it's always been baby-fine. It grows rapidly though, I need it trimmed every month or so! I don't give a damn about other things that may or may not happen, I've had a lifetime of medical drug-taking hence my cavallier attitude. One anti TNF tried to explode my liver, the blood tests revealed that but I didn't feel a thing. It led to three months off everything and then I realised the value of the meds. Now it's about getting the best quality of life I can manage and **** the risk. That is why the monitoring is there and I know it works. After the three months off all the meds (and alcohol) the only thing that settled my liver down was wine. The thinking now is that one can have a reasonable alcohol intake but that is very much up to your individual constitution. Somehow I get away with murder on that front.

I've never been one of life's live-wires but I can appreciate how tough this must be for those of you who are. Even with my indolent nature I get frustrated by my lack of energy. It's just taken me two hours to change the bed, but I've done it. I now start preparing the evening meal at some point in the afternoon so I can pace myself. Cooking and ironing are done sitting down as I can no longer stand for any length of time. I'm very happily married (we married just as the arthritis began after being together for nine years) and my husband is a wonderful support.


It takes time to find out what suits you but I would urge you to consider the meds. I started mine too late thanks to no-one recognising I had an inflammatory arthritis, so joint damage has occurred resulting in OA in my knees and ankles. I am in a mess. I cannot walk without crutches and now possess a rollator. I was refused new knees last August, being told to go back when I'm 55. Another two years of this is not enticing but I don't have a choice as I cannot afford to go private. Hey-ho.

It will also take time to develop your own coping strategies and to discover your limits. You sound as though you have a great deal on your plate - is your husband able to offer any support of any kind? DD

ichabod6

Hello Jessie,

It seems to me you have the right attitude towards drugs. All of them
are poison and my approach has always been minimum dosage for maximum effect. It is very easy to fall into the habit of taking a drug in an attempt
to off set another when perhaps the better approach would be to give up, reduce or change the original one.
Try to develope a good relationship with your gp, consultants and pharmacist, and discuss with all of them your drug situation at every opportunity. Do the same with your dentist and any other possible drug
prescriber who pops up in your life
Ask your pharmacist for a medicine review. A pharmacist is a drugs specialist who can give you loads of advice on the effect, side effects and
allergies caused by the drugs prescribed for you.
I've restricted this to drugs only. If you want to discuss general self management techniques, pm me at your convenience.
Take care.

dreamdaisy

Hello Jessie, how are things today? I hope you've been looking in and reading the forum, even if topics are not directly related to your set of circumstances they are always worth a look-through. I hope you are as well as you can be. DD

jessie1

Hi All
Thanks for all your posts
To be honest i thought i'd not had any, it was only when i saw the "view your posts" tab that i clicked and saw the replies.
Its lovely to hear all your stories (not all fairy tails, but i love the honesty that you all have towards PA)
I'm still very active and very grateful for it, like i said in my first post i try and reduce what my Rheumatologist has given me to one tablet instead of two. and that seems to work.
I’m a scary cat at heart I’ve never been happy taken head ache tablets, and now I’m taking cod liver oil tablet and naproxen once a day lol.
My main thing was getting it diagnosed and not feeling like something was wrong without a “name” as such. I’m now only seeing my Rheumatologist every 6 months so I very much doubt that my PA is as extreme as the you guys. But I will take all your advice and experience on, it’s scary how your body can be fine and dandy one min and then frail and “old” the next (I think that’s where I’ll struggle more)
Today like every other day has been alright, I’ve not felt tired.
I struggle more with my toes of an evening, and my wrist, sometimes my wrist is as frail as a kitten but that compared to the other posts on this forum is nothing really to complain about.
My Rhemy is lovely and will listen to everything that I say, he didn’t say not to downsize my dose when I told him I was only taken one. He just said that if things become hard that I was to take the second tablet at night. He says that my weight and active lifestyle helps to maintain a good balance, and that has recommended other ways of exercise so that I’m reducing the impact on my joints.
I will deffo look into change of diet, see if that does anything – and it’s also good for the family.
now i know where to look for posts i'll be back to see what everyone has to say.
again thanks for all your posts (now i've got virtual people with PA that i can gain information from)

Jessie

dreamdaisy

I look at the post title, that shows if anyone has replied plus the number of 'views' that you have had. You sound as though you are doing OK at the moment at that is a very good thing; if you can manage on lower doses of stuff then why not? Good luck! DD

jessie1

Thanks dreamdaisy
i suppose living in a hot country helps too
but for now i'm doing good, hows things with you ?
jessie

tjt6768

hi Jessie and welcome from me too.
I have a different kind of inflammatory arthritis to you plus osteo, BUT I suppose we are all in very similar boats.
You sound like you have a great attitude, long may it last.
Hope today is another good one for you.

You say you live in a hot country... Is that Scotland then lol..

All the best

Oooh, and welcome to the other newbie too..