Uveitis, Tight Painful Chest

Posted , 4 users are following.

The signs don't look good.

My breathing had deteriorated badly over the last 2 weeks. The weather has been hot at 40C over two days and later, humid.

I had a bad Asthma attack but one thing stood out. I failed to respond to the medication I normally take: Ventolin, Symbicort and Tilade. This is despite the Ventolin increased to 6 puffs every 6 hours.

Last Thursday week, had to take a large dose of Prednisolone to try to placate the Asthma. Starting at 37.5mg for 2 days, 25mg for 2 days and finally, 12.5mg before stopping.

Asthma was only marginally improved.

This is now causing consternation. Went to see my GP and she ordered a blood test.

I will know next Thursday if the Sarcoidosis has flared again.

The same conditions I'm suffering now are exactly the same conditions I had last time there was a flare up.

Time to consider the question of having to go through another 10 month Prednisolone course.

Right now, my anwer is no. No, I don't what to go through that again, even though the consequences of not doing so are dire.

It seems to be little point. Two failures so far, as the Sarcoidosis has flared up twice, just as I have just recovered from the last of the Prednisolone.

Not feeling well at all right now, the left eye is hurting again and light sensitive.

I'm going to ask about palliative care and whether I'm a candidate for such treatment.

I no longer want to do this any more.

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10 Replies

  • Posted

    Awwww I am really sorry to hear this sad

    Sounds like your having a really tough time.

    Dont say that though dont give up!!

    Pallative care i dont understand this part.

    I cant say I understand what you must be going through. But have you concidered other medications? Or trying an alternative approach? I have read a few books on this and will be trying them myself.

    I went back to the specialist on monday for them to put me back on predisolone 60mg!! I havent picked them up yet.

    I really hope your ok and feeling better!!!

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    • Posted

      Both my eyes have gone red in the past hour and a half. I can't believe this.

      Palliative care is making use of drugs not normally available. It involves going to a hospice.

      I'm dizzy and nauseous.

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    • Posted

      My doc at Royal Brompton hospital in London started me on prednisolone at 60mg for 9 months then reducing it by 2.5 my a fortnight, so far I don't have any Of The orrible side effects of coming off them, I'll be kept on a maintainance dose of 10 mg for another 6 month's.

      As you know the damage is already done but my doc thinks we can control my symptoms symptoms unless I have another flare up, I just wish I

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    • Posted

      I havent even collected them.

      I just am going to try something before i use them sort of as a last resort.

      Rignt now i feel ok just still on a energy dump from the last lot lol.

      I hope your feeling better xx

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    • Posted

      That's strange. I wrote a reply, Peter. I must have not hit the REPLY button.

      Your lucky not to suffer the side effects. I get them going on Prednisolone, whislt I'm on it and when I come off Prednisolone.

      I'm interested in the 10mg maintainence dose, from a preventative perspective. As you can imagine, I don't think much of it from a side effect perspective.

      So, essentially, you taper down from 60mg to 10mg and hold at 10mg for another 6 months. I'm guessing then you taper off gradually to 0 after 6 months.

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    • Posted

      yes that's the plan so far but as you know this disease can change so fast it makes you want to spin, over the last 3 or so day Iv got unbearable tinnitus it's driving me mad, but Im sure that slowly reducing on the prednisolone is good for avoiding the side effects, this damned disease just makes it's own rules as it goes along.

      PS. I'm having issues posting myself

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  • Posted

    Don't give up it was 3 years before my first sign of remission

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    • Posted

      Hello Camey, I'd give anything for 3 clear years. My problem has been a flare up only months after tapering off the first two times and now, two months after I finally recovered from those two prednisolone courses.

      I haven't had a clear year of reasonable health since this started in 2013-2014.

      Kate, just be careful with alternative treatments. I know what you mean by an energy dump. That's the lack of natural cortisol in your system, thanks to the Prednisolone.

       

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    • Posted

      Clarification.

      Sorry everyone on here, I worded my OP wrongly. (This is what happens when you are dead tired.)

      I only had the one flare up after the first Prednisolone course. Then I had to go on the second one.

      What I have now is possibly the second flare up, just as I have recovered from the effects of those two Prednisolone courses. That has taken a year from late 2015 to November 2016. So you see my frustration.

      I like to make sure I'm giving an accurate account as possible.

      Apologies on my part.

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