Help/Advice Needed
Posted , 3 users are following.
Hello, my brother (aged 26) was diagnosed with psoriatic arthritis approximately 2 years ago. He has been prescribed and taking a huge amount/dosage of methaltrexate as well as suplhazine with no improvement. His feet and hands are severely affected and it has now reached the stage where he is struggling to walk.
He is so young and being a male rarely talks about it, but we are willing to do anything we can to help, support/improve this for him. He leads an average lifestyle, doesn't smoke, drinks occasionally and works full time. Has anyone got any suggestions as to any medications/alternative therapies which could help him? He is under the NHS and they have now said the only option is biomedics which we know nothing about. If anyone could recommend a good specialist either private or NHS with experience in treating someone this young, or if anyone else has experienced biomedics and is willing to share their experience I would really appreciate hearing from you. Thankyou.
0 likes, 2 replies
Freebeer JanineF
Posted
I suggest you investigate the Psoriatic Associatioon. Also look at best practice hospitals e.g. Where they haven a specific psoriatic arthritis department. E.g. Leeds, Bath/Bristol and have a look at research. Book a private appointment with Professor Macgonagle in Leeds. Cost £200 but it could be well worth it to get a brilliantly knowledgeable report.Sadly if correctly diagnosed this is a chronic condition. Be very aware of the side effects of drugsLots of guts and perseverance are required and at present I don't think there is a known cure though there are various drug treatments like Humara
very best wishes
Okapis JanineF
Posted
Of course there are alternatives! He sounds like a prime candidate for biologic therapy ie Cimzia, Humira or Etanercept. Does he attend a hospital with a small rheumatology department? If so I would suggest a 2nd opinion from a rheumatologist in a teaching hospital with a large department. Has to be a large hospital where they have experience of PsA. Southampton no runs a clinic for PsA sufferers for instance
If he cant take a biologic, maybe he's TB positive there are other drugs to try.
Suggest you look on the Arthritis Research UK website for a full listing of the alternatives. His GP should be suggesting a 2nd opinion before they start physically messing with his joints, I rather think.
In the meantime, things that will help..exercise in a spinal/physiotherapy pool with very warm water. I became jet propelled after spending time in a thermal spa in France.. effect is not long lasting but it does help. If he's on methotrexate, he really should not be drinking or very little. Difficult for a young man at times I know.
Has anyone talked to him about pain pacing? Important if youre to live with something like PsA. I suggest something offered by NHS Scotland called Moodjuice - stick Moodjuice and NHS Scotland into Google. Concept is bizzarre to begin with but it works, I'm living proof and practice it on a daily basis.