Where now / Next?

General Blog
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Hello to all of you reading this post, and I trust you are ok?

This post is not for the sake of a 'good old moan' about my not responding as well as hoped (or not at all) to the 'main stream' med's available to PSA / Reactive Arthritis patients. But to throw my metaphorical hat into the ring, in the hope that my own experience is not so unusual, and what to do next?

I was originally diagnosed with Reactive Arthritis when I was 22 years old (some 25 years ago). Since then I have received pretty much all the treatments available, both then and now (NSAID’s / Inter & Peri Articular Steroid injections / DMD’s / Anti TNF / Physio and surgery) with little, or no long term gain. Consequently, I now take Tramadol & Arcoxia at the highest non hospital administered doses, along with Omeprezole to help protect my stomach (my ‘spoon full of sugar’ lol). And I have recently been permanently retired from work at a young age, as a result of my PSA. It has left me a virtual ‘hermit’ in my house, afraid to do anything that might further aggravate the condition…………..

As a result of the above, I suppose that my question is this; What do I do next, as I feel I have been left ‘to my own devices’ by the ‘Medical Fraternity’ since being retired, and their seems to be no long term ‘treatment plan’ for me…!!!! Except from going to my doctor as, and when the self administered drugs don’t adequately work…???

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My story is similar to yours. I am having a bad flare since August. I exercise in a warm pool 2-3 times a week. I like to do it 3 times a week but due to flare I am having trouble getting to the pool often enough. I do a series of exercises that PT taught me or join an Arthritis class for company. I also use the whirlpool there. I am doing this to strengthen myself as "land" exercises are forbidden for me right now due to joint and tendon inflammation. I think this is so important to prevent further damage. Even though I am fully disable I still have a game plan with my Rheumy. I have been poorly controlled on all the meds since I was diagnosed in 2008. But I did have this disease for 30-55 years before diagnosis so it probably is not responding to treatment as well as someone who seeks treatment earlier might. I have tried all the TNF and will be starting Remicade next week as the Enbrel has worn off or I have developed immunity to it. I continue to use mtx weekly. I would speak with your Rheumy at your next visit to make sure you both have the same game plan. Life doesn't end at retirement, I really really hope!

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Hey Happy Chappy,

it seems most people go round and round on drugs. Like Michael says, if one stops working try a different one. Add another and make cocktail. If you think your doctor has washed his hands of you--if at all possible, GET ANOTHER DOCTOR! Don't give up.

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Hello Happy Chappy.

Just your name sounds optomistic! It is not easy to come to terms with knowing that there isn't anymore meds that will help. I try to do other things as well as meds to help me cope with my PsA.

I have had to find what helps me for me. I changed my Rhuemy. Then I had to work out how to get him to realise how much my joint pain affects my life. I need to change my general practicioner but it is difficult because I live on an island so I guess I will have to work harder at working out how to work with him and educate him in understanding the full extent of what my disease has on me..

I have changed my eating habits and I made that choice. I am still trying to find the best possible foods that works for me and I have tried many different elimination diets that did not make any significant change for me. I do know eating plenty of fruit and vegetables helps my general health. I limit red meat, avoid fried food, any over refined, manufacured or preserved foods. I use natural sugar alternatives and cut the refined sugar intake down as much as I can. I cut down on eating bread because I try to avoid yeast. I eat foods that are suppose to reduce inflamation and avoid the foods that cause inflamation. I am not over strict or too concerned about eating something occassionally that I beleive is not good for me. It may not be a cure for my PsA but I believe the nutrition gives my body the best chance to cope with this disease.

Getting outside into the sunshine for a least 10 minutes a day and living where I get plenty of fresh air that is not polluted can only benefit me. I am trying to use natural products where and when ever I can to avoid the chemical additives.

Nothing seems to help me when I am in a flare and that gets me back into the vicious cycle of not getting out doors and not eating properly as I eat what I can put together in a couple of minutes and I don't get proper nutrition and I believe it makes it harder for me to get over the flare. I then resort to a multi vitamin capsule but I don't think taking vitamins is as good as eating good fresh food.

When I am not in a flare I go to the Swimming Pool three times a week in Summer which it is now in Australia. The water gets a little solar heating so it is not cold on my aching joints. I am almost pain free when I am in the water. I am exercising in the water and doing a little swimming. I am not sure what I am going to do in winter, but I am thinking of buying a very small hot tub to put on my deck.

I also have a few hobbies to keep myself occupied my favourite one painting abstract. Finding things to do that I can loose myself in is well known as a tool in pain management. The distraction does help.

I use my breathing and relaxation techniques and this helps with pain. Tai Chi is very gentle and helps with joint movement. I use a DVD to follow but prefer to do this outdoors.

Having a sense of humour and laughter helps. Read jokes, watch comedies and laugh at yourself. This gets the bodies endorphins working which help relieve pain. So does exercise and smiling!

I can also feel like a hermit and getting out to go to the pool has helped me connect with other people again. I do connect with other people on the phone and by email. Visitors to my home are rare these day. For me it is important that I do what I can to avoid having days that make me feel down.

What I am trying to explain is that I had to look a little harder at my life and think about how I could do things differently that is within our abilities when there is no more meds that are going to work for us.

I do hope this gives you some things to consider that might help you.

Regards

Bella