Advice please: diagnosed nearly 3 years' ago for Psoriatic RA and allergic to every drug incl steroids! Is there anything left for me to try

[s7j7e7]

Cimzia (biologic) was the worst and took a year to get over side effects; can only tolerate Naproxen (not even stronger varieties of anti-inflammatories) and feel my Consultant has given up on me. Also tried Methotrexate, Hydroxychloroquine, you name it... GP tries to help with pain control. Worried that although I can hold down a part-time job now, my elbows and hands will give way totally soon. Any recommendations greatly appreciated. Many thanks.

[mattcass]

Hi s7j7e7, It must be a terrible time for you without treatment for your RA, I am in the same boat because of my lung problems painkillers are not strong enough the only thing that gives me some pain relief for my RA is 20mgs Steriods daily, I keep hoping some new trial drugs come out soon, I am first to volunteer, Good Luck.Mattcass

[s7j7e7 in reply to mattcass]

Hi Matt, thanks for your understanding. I'm hoping for some new drugs soon, too!

[Hidden]

Hello BOB here

You have tried all the DMARDS like Methotrexate and Sulphursalazine, and they have also had you on the new type Biologics -TNF as well, Both these family of drugs can cause some very unpleasant contra indications.

Your NSID can cause problems as well so one pathway here is too take a COX 2 medication that some find more beneficial there are furthe contrindications regarding these also

Over the last thirty years I have suffered from the same condition and have gone through steriods, NSID , DMARDS

They were going to try me on -TNF although they changed their mind and have decided to give Methotrexate by injection

When I first signs of this problem it appeared as a small blemish on my scalp no larger than a half penny, within 18 months it was effecting my hands spine and all points south. and was paying for private treatments for manipulation for about five years. When it was diagnosed treatment plans were introduced that included the the above treatments, you will be suprised what medications they can give you and all of them are very potent It took four years to get my basic medications sorted.

Treatments will include U/V light treatment, with rubs of potent creams three times a week, when that does not work you will be possibly be asked to take part in where you will need to take medications to sensitise your skin to for the skin to become sensitive to the treatment, further medications may need to be taken because again the medications have some severe contra indications

One thing you want to get onto is Pain Clinic so you can control and treat your pain by TENS, Relaxation and pacing.

Further courses may also be offered.

You will also be offered physio for more treatments so you can learn how to treat your condition.

You will also need to know how to treat your skin with all the wonderful creams that they will supply you with.

The whole process is really character building, I have not mentioned the names of creams and all the medications we may need to take and the creams that are tried to clear the skin

The treatment that I have gone through over the years effects your mental Health also so you may have that to contend with also.

To give advIce is difficult the whole process can be very debilitating and it just goes on and on.

e best

All I can advice is be upbeat, and do not crumble

All the best, keep a hold

BOB

[s7j7e7 in reply to Hidden]

Hi Bob, Thanks for your helpful words of encouragement. I do try to keep positive!

[earthwitch]

Seems like you have temporarily come to the end of the line. I say temporarily, because treatment options for the spondyloarthritis group of diseases are rapidly increasing as more research is done, so don't give up on the rheumatologist just yet. You never know what might be around the corner.

In the meantime there are some other slightly more self help things that you could investigate: (Note that I am not advising you to take on any of these suggestions, just to investigate them as possibilities to discuss with your doctor).

If you check out the forum at kickAS.org (its an international forum for ankylosing spondylitis and other forms of spondyloarthritis) there is quite a lot of info about the no starch diet (or low starch diet), and lots of people to ask questions about it. There is a bit of theory around about why it works (to do with klebsiella in your gut, and that triggering the autoimmune reaction that might cause spondyloarthritis), though as with anything like this it doesn't work for everyone. It would seem to be worth a try if you can't take anything else though. The classic book on it, that you should be able to get from most libraries, is called "The IBS Low Starch diet" by Carol someone. You can also choose how rigid you go with the diet. Some folk do it absolutely strictly, and some just do "low starch". I'm in the latter group.

Another option would be to look into LDN (low dose naltrexone), which is an unlicenced treatment that a lot of folk with MS and a whole lot of other autoimmune disorders are starting to try. Its unlicenced because its a much much lower dose than is normally used (for drug addiction because its an opiate antagonist) and its being used for a different reason, but again there is some theory about how it works in autoimmune disorders, so again, worth investigating if you can't take anything else. google the lowdosenaltrexone website to find out more, and print off an info sheet for your doctor. Some GPs will prescribe it happily, but others take a bit of convincing, and the LDN organisation will help give you the technical details and research to give to your doctor. The onlyt difficulty is that you can't take opiates (like codeine) at the same time, but for most folk, it does seem to make enough difference that they don't need anywhere near as much pain relief.

Visiting one of the international forums (kickAS that I have already mentioned, or the Spondylitis Association of America) might really help look at alternatives that have a better chance of working as there are just so many more folk on those forums, many of whom have PsA, so you can really ask questions and find out what has worked for others in your situation.

[s7j7e7 in reply to earthwitch]

Hi Earthwitch, I had never heard of LDN or kickAS so thank you so much for this new avenue, which I'll follow up. It's so helpful to know that I haven't necessarily reached the end of the line yet.

[Hidden]

Hello BOB here

You can try PAPAA this charity deals with the full spectrum of our condition. They explain treatments as the condition can effect the eyes, the crown jewels and your ears. The other problems are your nails, scalp and one of the main problems we have is extreme tiredness, it will on some instances effect the buttodcks.

It effects all small joints, spine shoulders, knees feet, toes, ankles and hips, also the tendons throught the body

There are several types of this condition a sample of patients will not suffer the arthritis part of the infection

Psoriasis is an autoimmune condition, therefore the condition is treated as such hence the drugs that in the past were used to treat cancer.

You can contact

PAPAA

3, Horseshoe business Park

Lye Lane

Bricket Woodans.

St Albans

Herts

Telephone [phone]

e mail [e-mail]

Hope that helps

BOB

[s7j7e7 in reply to Hidden]

Hello Bob, thank you that is a helpful reply. Tiredness certainly is an effect; I am so lucky to be able to work part-time and collapse the rest of the week to re-group!