Scleroderma & Raynaud's UK (SRUK)
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PREDNISONE!!! whats the alternative in the UK?

Hi everyone, at the moment living in France but returning later this year to live back in the UK. I have lots of Autoimmunes including Scleroderma, sjorgrens, RA, AIH, Lupus, etc

I came off Pred very slowly because of past problems, finally got off them totally in December and since then I have had problems with water retention, severe pain in arms/hands/legs and hips - numbness and pins and needles also. now all the consultants are saying they think I should go back on 10mg pred for life? I really don't like nor want to be on pred so before i start back on them (NO alternative available here!) I would like to know what alternative meds are used back in the UK? I do not want to start them and then have to come back off them

I really really hope there is an alternative and that the UK docs are not such great fans of pred as they seem to be here :/

thanks in advance for any help. info or advice :)

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I've just researched it for you.. apparently a medication drug called medrol (methylprednisolone) is pretty much the same thing.. used to treat arthritis and other immune diseases .. have a look for medrol

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Medrol (Methylprednisolone) is a glucocorticoid which treats a wide range of medical disorders by blocking the release of inflammatory chemicals. It is used to treat various disorders affecting the organ systems, as well as other medical conditions. In addition to working as an anti-inflammatory agent, this medicine can also exhibit other effects, such as alterations to the immune system response and metabolism. Some patients affected by endocrine disorders may be treated with this medicine (possible alongside other medicines).

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thanks Rebecca, i will read up on it :) x

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Hi there, to be honest there may be slight variation in treatment depending on the hospital you attend, but it will depend on your physical symptoms; relevant investigations (such as lung function tests, ECHO, ECG for heart etc) and blood test results (to include inflammatory markers, immune activity (e.g. ANAs, ANCA, Complement), full blood count, liver function, and kidney function to name the principle ones).

If you have active disease then in the UK they would tend to start with something like Hydroxychloroquine, an antimalarial drug that has a weak immunosuppressant effect and is commonly used for patients with Lupus, scleroderma and RA. Then they would look at Disease Modifying AntiRheumatic Drugs (DMARDS) such as methotrexate, mycophenolate, Azathiapine, which are all immunosuppressant drugs designed to reduce the activity of your own immune system against yourself. If you had very obvious disease they will go straight for DMARDs and you may be on hydroxychloroquine too. They may also include use of steroids such as prednisolone if your inflammatory markers are high, while they are waiting for any of the immunosuppressants to start working (they usually take at least 6 weeks to kick in).

There are also other biologic drugs and biosimilar drugs if you don't respond to the others. So there are a number of things they will look at and a number of things they can try.

I hope that all makes sense. Hopefully you will live somewhere near a decent Rheumatology department.

all my best

Lucy x

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Thanks Lucy, I am already on Cellcept which has kept the diseases under control it is just this last 18 months that they have flared a lot and i had a lot of problems with my teeth and jaw bones hence coming off the steroids which i was on for 10 yrs. I just need to find something to replace that without it causing more damage :/ x

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I’ve been on prednisone for 15 years. I was on higher doses but have been able to maintain on 7.5mg.

I’ve lung involvement, no doubt it’s helped to keep me alive.

Hope you find something. Good luck x

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i was on them for 10 yrs but have had a lot of problems losing my teeth and problems with my jaw bone and also ankles and wrist bones :/ x

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If you can find an acupuncturist that specializes in Traditional Chinese Medicine - you should look into it.

Research it. Especially with studies recorded on NIBH site that monitors patients that undergo these studies.

Make sure they have been there for years and look up their reviews.

Nothing will stop our diseases. But perhaps help us to cope.

TCM could have advantages over the strong drugs thrown at us by these doctors. We just don’t do it because it’s so foreign to us.

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thanks Mags I will look into it :) when i get over ......... I am always open to anything especially natural non toxic healing - I am also hoping to start the wahls diet x

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You have a few different conditions to me so unsure if what I say will be any use to you.

I have never managed to come off prednisolone completely but in recent years have managed to find ways to stop increasing it further when I have been unwell.

What I suggest may not go down well with everyone as healthunlocked seems to favour prescription medicine over other options in my experience. And it may well be the case that you do need to restart some prescription meds.

But I have found ashwaganda to be useful at times. For me it seems to amplify the steroids. Potentially it works in some similar format.

Read up on it to see if it might be able to assist you.

Something else is aloe Vera. But not all are the same. If you are interested I will message the name of a brand I have found useful. I am not a supplier or distributor just an occasional user.

Thirdly I am a big fan of high dose vitamin c.

Andrew Saul gives much information on high dose vitamin c, but there are many others as well.

Try to eat cleanly removing sugar from your diet. Flour is sometimes said to be connected with arthritic flares.

Sorry to hear you are having to return from France. It was always my dream to retire there, but unlikely now.

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thanks for this i will certainly look it up :) i have been reading up about diet and also vitamins and their roll in autoimmune diseases weirdly :) I want to get my magnesium levels checked also when i return as they wont do it here and i keep having this strong feeling that its a vitamin deficiency that is causing the latest flares - if you ever want to just escape real life this place is the place to be but it is very basic and i find now i cannot cope with the work especially the winters here :( it is however a place that aids to destress lol x

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overnighthearingloss.... I agree with you!! However. We all need to be careful to pick up any supplements based on a patient opinion and seek a licensed and reputable naturopathic doctor or TCM practitioner. Never would we want to pick up a bunch of herbs and vitamins without a professional - trained doctor. Spend the money and do it right! 😉

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I always read very widely before deciding to try anything, and only ever try one thing at a time looking for positive or negative symptoms.

I have to be sure I am happy in myself with any potential risk prior to testing things.

I would hope that anyone else would operate in a similar fashion.

But sometimes dietary changes alone can produce great results so we have to be conscious of everything we choose to ingest. It took me quite a while before I really believed that. But have found it to be true.

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