Sticky Blood-Hughes Syndrome Support
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Waiting for Rheumy appointment.

I haven't been diagnosed with APS, but I have some symptoms . (I take 75 mg of Aspirin a day). Blood tests for APS came back normal. Also 15 other tests came back normal too.

I have coeliac disease and under active thyroid. I have FINALLY been referred to a Rheumatologist, but that is not till July 18th and I am in so much pain all over my body.

I went to GP and she offered me Amytriptaline, (can't spell it) which I know doesn't suit me. So told her I couldn't take it. She offered me another(for nerve pain), but on checking this one out, it seemed just the same side effects so didn't take that either. Finally I'm on 400mg of Ibuprofen 3 times a day.

It may help but I am in so much pain all over my body all the time, the thoughts of waiting for a hospital appointment in 3months time is starting to get me down.

Any suggestions or comments would be appreciated.

Thank you

10 Replies
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Hello :)

Does your hospital have a cancellation system?

I saw my rheumatologist much earlier by taking a cancellation. Ring the appointments office and ask their process. One of our departments puts you on a list and then rings you up as and when; another requires you to ring at the beginning of each week to ask. You do have to prepared to be given little notice though - I was asked just a couple of hours before the appointment - I snapped their hands off - lol!

Lynn.

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Thank you Lynn I will try.

Susan

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I hope your GP offered you a stomach protector if you are taking so much Ibuprofen a day? Omeprazole comes to mind!!!

As a suggestion to cut down the amount of NSAIDs that you are taking you could cut the dose in half to 200mg and take 1gram (1000mg) per dose of Paracetamol with it. This is similar to taking the paracetamol/codeine mixtures but without having the side effects that codeine often gives like constipation. In studies the Ibuprofen/paracetamol combination works as well if not better than codeine and the effects last longer so you may be able to cut down the number of doses per day. Please do not take my word for this and check with your Pharmacist first before taking this combination. I was introduced to it by my GP and found it to be quite effective.

The other worry is taking so many NASAIDs with Aspirin, is your GP aware that you are taking this together?

Personally I would have asked your GP for an urgent referral to the Pain Management Clinic at your local Hospital where they are experts at managing drugs and getting pain under control with a number of strategies. They are experts at working with and along side Rheumatologists in particular. Think about going back to your GP and having another go to sort this out.

Please let us know how you are doing. x

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Hi Sue,

Although I'm not supposed to take Ibuprofen because I take Heparin it is about the only thing I can take due to all my allergies and it works well.

Beware Paracetamol as it is not usually prescribed when history of liver problems.

Good idea from APS to be notified of cancellations they can flag it up on appointment system.

xx

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Cant take the credit for that Sue it was Stillwaitings idea! :-)

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Thank you Sue.

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Best of luck write everything down, so you don't forget what you wish to ask on the day.. and may be in a rush if you do get a sudden cancellation! Mary F x

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Thank you MaryF

I have already a list of symptoms etc. I also gave a list to my GP for my records.

Don't know what to ask though except What is it??

I cope better when I understand what's happening to my body.

I am tired of them saying there is nothing wrong with me when I feel so ill.

I expect you all feel the same.

XX

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Call before you go and can go through it withyou if you like xx

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Thank you Sue. That's a good idea.

I will. XX

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