Finally, I've been diagnosed!! I DO have inflammatory... - NRAS

NRAS
25,849 members29,515 posts

Finally, I've been diagnosed!! I DO have inflammatory arthritis.

I've been a little quiet of late, I wanted to get my head down and try not to think about things too much. I've also been enjoying a short remission (back into the start of another flare cycle now however) so i've been busy grabbing life with both hands, whilst I was well enough to do so.

Anyway. I wanted a second opinion, and I had the Haywood Centre for Rheumatology recommended to me on here, so I asked to be referred there and finally had my referral today and saw a specialist there.

She has confirmed that I have Palindromic Rheumatism, a rare form of Inflammatory arthritis.

The relief I feel is huge. The other week at the pain clinic my other problem, which was first brushed off as Fibro, has also been diagnosed, and I also have Chronic Widespread Neuropathy (a fancy way of saying nerve damage).

Thirdly, the problems with my back, ongoing since the accident, are seen as entirely separate to both of these diseases, and it's been recommended that this is treated separately through physio.

I've been told I will start Plaquenil for the Palindromic Rheumatism (I need to arrange to see my GP for this) and after my allergic reaction to the Tapentadol for my nerve damage, I've been given BuTrans patches to try instead. I've not started these patches as yet, as I need to arrange for time off work as I am not allowed to drive on them during the start of treatment. Hopefully I will be able to arrange to work from home as i've used up all my holiday days now (several taken instead of sick days).

I want to say a massive thank you to everyone who has been so kind, understanding and supportive during my 9 month journey to diagnosis. I know these meds are not a magical cure, and I know that i've still got tough times ahead as my body adapts to various med combinations and doses, but I can finally see the light at the end of the tunnel now, and thank you to each and every one of you who has taken time out of their day to send comments and messages to me.

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Eventually we can say welcome to the club lol! Hope you can get on the right track now. I'm on BuTrans patches, started on 5mcg, worked up to 10mcg & see my GP on the 13th to discuss increasing it again. I'm fine on them & are helping with the pain but fear another 5mcg will be advised next visit. Just a little woozy the first couple of days initially & by the 6th day the dose is more or less used up. I've felt fine enough to drive basically since day 3. Hope they help your pain too.

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Great to hear you were well enough to drive from day 3, that's made me feel a bit better!! :) Thanks for the official welcome too ;) xx

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Strange to call news good when it is bad in a way - but I do say well done for hanging in there and getting the answers you needed and deserved. Let's hope yours is addressed by the Hydroxichloraquine. It is a very good drug and generally well tolerated I believe - and hope the patches help the rest. TXX

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Thank you Twitchy :) x

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So pleased for you (in a strange way)! Now you know what you have to deal with, and can find ways to cope. I have been on hydroxyquloroquine for 5 years, it hasn't been the complete answer for me, but it has certainly helped, and I have had minimal side effects from it.......more than I can say for most of my other meds!!! Well done for persevering. I had been wondering how you were, I do hope you're on the right path now

Good luck, keep in touch. Mavis x

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I'm really glad to hear it was a help for you. I have my fingers crossed! Also good to hear about minimal side effects. Thanks for your kind words Mavis x

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Happy to hear the relief in your message. Hope better times are ahead now

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Thanks Cathie - me too!! :)

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It is so good to know one's enemy, so I understand your relief. Nothing more frightening than the unknown. I wish you well from hereon. Jo

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Thank you Jo. I have a friend who is a GP and they believe the same, not knowing is often the most distressing thing to deal with. Thanks for you well wishes :) x

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Hey! Well done you! Oh I so hope this diagnosis leads to really getting on top of the disease. Don't expect too much, too soon but with your attitude I'm sure there are many good times to come.

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Thank you! I'm going to try and stay optimistic, but without expecting miracles or fast changes. I guess my next posts will be asking/moaning/wittering on about drugs, dosage and side effects lol :)

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at least you know what you are dealing with now. wishing you well x

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Glad you've finally got a diagnosis hun xx

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It is a relief when you at least know what's wrong. Hope all goes well

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Good luck with starting treatment and let us know how you get on. Take care x

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Thank you for the well wishes everyone, much appreciated xx

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