Psoriatic Arthritis- advice on supporting my partner and natural route
Posted , 8 users are following.
My fiance has been dignoised with sporiatic Arthritis after a sauage finger and some other joint issues. He has a small patch of psoriasis when he was a child but nothing since then. His uncle did have psoriasis though.
?
He's had one steriod injection which has helped majority of his joint swelling (bar the finger) and has been put on Sulfasalazine.
He's recently gotten a nasty fever and his GP advised to come off the meds. We have called his rheumatology department in Hillingdon 4 times, left three messages and still the doctor doesn't call back to advise what to do about the meds. Also the last we saw his rheumatologist she said he should get an injection directly into his finger to improve that, but his appointment was back in mid-november and they've booked him for the injection 18th jan! is this right- should he be waiting two months for it?
He's now getting very depressed and I want to support him in any way I can. He would like to try some natural routes as he already is on daily thyroxine tablets for his thyroid and pumping more chemicals into his body isn't ideal and currently Sulfasalazine isn't helping as he's getting sick.
Does anyone recommend a good rheumatology department in the south west? has anyone gone down a herbal route and seen results.... please help!
2 likes, 24 replies
EileenH amy19451
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There may be "natural" "herbal" things that may help him feel a bit better when used alongside mainstream medicine - but there are none that will stop the progress of inflammatory arthritis effectively on their own whatever you may read on the internet. And consider - natural or not, if something is strong enough to have an effect, it is still a chemical. At least pharmaceuticals are exactly what it says on the tin - they are subject to very strict controls and monitoring. Supplements are not and frequently have things in them that are downright dangerous but not declared on the label - especially items purchased over the internet. And if you are on any sort of medication, prescription, OTC or supplements of any sort - they can all interfere with one another so never take anything you haven't checked out thoroughly for interactions with a pharmacist (not counter staff in a chemist or health food store) or doctor.
As for the dealy in the injection appointment, it probably sounds harsh to say it - but it is nearly Christmas which takes the best part of 2 weeks out of the clinic sessions, that partly accounts for the wait for an injection that is (I assume) into the joint? Everyone will be in similar states - winter pressures in the NHS are worse this year than ever before. But I won't get into a political discussion, this isn't the place. While it hurts a lot - it isn't life-threatening.
Sulphasalazine is the first line drug usually - if it doesn't work/he can't tolerate it it will probably be changed once a trial period is over. Often the body protests to start with but then gets used to the drug over time. It isn't uncommon to stop DMARDs (Disease Modifying AntiRheumatic Drugs) if the patient develops an infection because they suppress the immune system and that then allows the immune system to fight the infection better. It isn't permanently, just until the infection is past.
Do you mean southwest London or do you mean the southwest?
amy19451 EileenH
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thanks again
hope4cure amy19451
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Good luck!
EileenH amy19451
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Sorry, no I don't. Don't be misled though - a larger hospital sometimes brings with it a greater level of impersonality and risk of being lost in a mass. It doesn't always equate to better care. Give Hillingdon a chance first, one of the best rheumatologists I know in my own area works in a similar sized hospital! And if you seek a referral elsewhere you will join a waiting list again.
I think you have to be patient for the moment and see how it progresses. There is a list of drugs in the NHS that have to be trialed in order - needless to say, starting with the lowest cost. That does mean though that there is a lot of experience with it. Then they work through them to find the one that works for YOU. You can't jump directly to the big guns - even the big guns don't work for some people and maybe one of the earlier drugs on the list would have worked well too. There is always a risk at some later point that any drug will become less effective and another be needed - and you can't go backwards. None of the drugs usually work in days, and it does mean waiting out a trial period for most things. Autoimmune inflammatory arthritis is not a one size fits all disorder - it will take a bit of time to get it set up right.
Okapis EileenH
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Hillingdon should be biggish - the logical place to go would be a London Teaching Hospital?
EileenH Okapis
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I'd have thought Hillingdon was - it has 3 universities associated with it!
If PsA isn't that common - why was it what different rheumatologists were insistent that I and several of my mates with PMR/GCA had? It was the first thing they thought of! Any rheumatology department will understand DMARDs and also biologics these days. Hillingdon isn't a single hospital - it works with Mount Vernon and is described as an exceptionally busy hospital. But even medical schools can have their moments - not least because they have too many patients!
Okapis amy19451
Posted
Not a good idea to go down the alternative route when on DMARDS such as sulphasalazine. There are unpredictable interactions. There is no proven medically evidenced alternative medicine to take, alas! Those who do to the exclusion of the tried and tested meds always regret it. It wastes time when the disease shouldbe treated aggressively at an early stage! There is evidence that rosehip or Gopo can help with infammation. I found it interferred with painkillers though.
Sounds as if your finance is attending a smaller hospital where staffing is an issue. I would suggest Southampton General as a teaching hospital where they have experience. I attend this hospital having left London hopsitals behind. Your GP can refer you for a second opinion. But in the circumstances they should be chasing your rheumatologist quite hard for an answer!
I cannot conceal from you that the process of treatment for PsA is a slow and wearisome process. It can be temporarily helped with body cortisone shots but you cant have too many of those.
And yes, alas treatment on the NHS can be very slow! Sometimes you can speed things up by ringing and say you'll take a last minute cancellation.
Unfortunately it can take up to 3 months to determine whether any DMARD is working or not. I suggest you read up on the Arthritis Research UK site on psoriatic arthritis NB spelling!
Good luck
Later (do this before asking for a second opinion) There should be a rheumatology nurse in the rheumatology department? You could try contacting them? Or if the consultant fails to respond at all go to PALS ( patient advice and liason service) and tell them what has happened. I've always had good responses from them when needed but some are better than others!
Guest amy19451
Posted
Hi Amy,
I've had Psoriatic Arthritis since I was 12 years old and like your boyfriend only had a small patch of psoriasis as a child. I've also been on Thyroxine for most of my life. I can't help you with medical help available in the US as I'm in Australia.
Steroid injections are pretty routine and can help with inflamation. It's the inflamation that does the damage to your joints. His body is fighting against itself. To keep that at a minimal level they will try several different drugs to find the one that works. It can be really difficult through that stage. I've had both my hips and knee joints replaced when I was in my 20s - but that is very rare. You sound like you are already doing a great job supporting him and he will have good and bad days. Chronic long term pain can be hard to deal with. I did try Sulfasalazine at one stage but found I was allergic to sulphur - the main ingredient.
As far as "natural" therapies go - I'm a realist. I want to know what I'm putting in my body and that my medicine has been throughly tested and works. Most "herbal cures" do not disclose their content or whether they work or not. There is no "natural" form of thyroxine and it's really important to take it as directed. People try to be nice with what worked for their Gran but they don't realise that there are 150 different types of arthritis - what works for osteoarthritis doesn't work for the other types. I did try the "herbal" route in the early days and it made no difference except to my wallet. I also get angry when people imply my doctors just want to get rich - not help me get better. If there was a "natural cure" any drug company would be happy to test it and take it to market. Just see medicinal honey and using silver in wounds - both "natural" and both now used in mainstream medicine. Gold was also used to treat some types of arthritis.
I really hope you can find a good rheumatologist and a GP. If you need any other information - I'm happy to help.
hope4cure amy19451
Posted
vagas stimulators, DEMARDS., MTX , or Humira biomdrugs.
psa can cause severe damage to the joints if not caught ang controlled early. I have it in THR pip joints in my fingers and apremilast had helped mwe after trying many of the above meds.
Chechnwith th a rhumytologist to find what helps you.
everone is different any natural treatment for PSA has not been recommended. TNF factor is the issue with PSA and I hope you fine what helps give you relief every one is different. So not know what other meds you are on or health history. Best is to see a rhumey ASAP, THEYBAREVwell trained in manyntypes of mrthritis and medications .
amy19451 hope4cure
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robert271163 amy19451
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robert271163 amy19451
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Sorry to hear about the problems your fiance is experiencing, I had one of 2 injections in to my finger earlier this year but i refused the second due to the pain from the first. saying that it was 11 months from diagnois to getting the injection.
I would be getting on to Hillingdon Hospital and write a letter of complaint to the senior management due to the lack of correspondence from the rheumatologist and the department, I am lucky my Rhumetology dept get back to me the same day when I leave any messages.
I have the problem of fingers swelling with increased to having a swan neck finger. I am on Sulfasalazine, Methatrexate, Tramadol, Co codomol Ibruphen and about to start on Cimzia.
There is some that think Tumeric helps with PSA.
hope4cure robert271163
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amy19451 hope4cure
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Sorry i'm new to this... what are congers?
amy19451 robert271163
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His mum has already got him on Tumeric, but we wouldn't know if did help unless he completely came off his medication. Not sure thats a risk we should take.
robert271163 hope4cure
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robert271163 amy19451
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robert271163 amy19451
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It doesnt help that your Rhumy is not communicating with you. First Stop Raise a complaint your NHS Trust have a duty of care and a duty to respond
hope4cure robert271163
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Okapis robert271163
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Cimzia works better for me than enbrel, Robert! Developed jaw inflammation on enbrel - mind you it was after 12 yrs on enbrel! Early evidence indicates less side effects on Cimza too.
The manufacturers of Cimzia provide the first 3 months free. Thats one hell of a saving for the NHS at around £10,000 a year!
robert271163 Okapis
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hope4cure robert271163
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keep posting let us know how it working for you..
robert271163 hope4cure
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