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Scary flare

Posted , 6 users are following.

Susanne_M_UK
Susanne_M_UK

I've been feeling generally unwell with the odd chest infection, stress etc since October time. I've been hovering around the 20-22mg pred Mark during this time.

During January, my symptoms were slowly getting worse and I spent most afternoons sleeping or resting. Then I started getting pain in and behind my eyes, across my forehead and in the temples.

I rang my new rheumy's sec at St George's and told him what was going on. He said he would email rheumy and one of them would get back to me. Nothing! I rang again Friday morning and left message on voicemail. No return call.

By then, my hubby was getting in a state about me. I tend to be more laid back and don't want to make a fuss, - silly, yes I know!

So at 10am, we went to our local A & E where I was seen within 5 minutes even though there was a long waiting time. I saw a lovely doctor who spent time listening to me. He phoned the rheumatology consultant at St George's who is the boss of my rheumy there and had a long discussion with her about my treatment.

Although my ESR and CRP were normal, they gave me 60mg of pred, on top of the 25 I had already taken that morning.

By now, it was about 3.30PM and they decided I should be seen by an eye specialist, so the doctor wrote a letter and sent me to Moorfields Eye Hospital A & E in London.

Eventually got there and had various eye exams, bloods, including blood sugar levels, which were borderline and eventually saw a doctor. She founded nothing wrong.

We arrived home at 11pm! Long day.

I now gave an appointment with the senior rheumy at St George's tomorrow (again arranged via the A & E doctor).

Since yesterday, I've had no pain and am so full if energy that I almost feel normal. I can only imagine that the lower preds I was taking just weren't enough and I've been having low level flaring for a while, culminating in the eye/head pain.

I started methotrexate early January, so was also confused about any potential side effects from them, but I seem to cope ok with them.

Anyway, just goes to show that you don't necessarily need to have raised markers to have a flare.

1 like, 4 replies

4 Replies

  • EileenH
    EileenH Susanne_M_UK

    Posted

    I keep saying that - the markers can lag behind quite a bit. And in some people the markers don't rise again after they have been on pred for some time. Why? Who knows - but there are many papers which emphasise that the only reliable factor is the symptoms. A single raised marker shouldn't result in a kneejerk reaction to raise the dose - but equally, symptoms without raised bloods should still be taken seriously.

    I've felt decidedly "off" for a few weeks - nothing in your league though. On Thursday I could barely get up the tiny slope into the village when we walked in. So I finally went to the GP. Two doses of antibiotic has resulted in an almost miraculous recovery: UTI lurking with no symptoms. Pred covers a multitude of sins, even at a low dose. 

    • constance.de
      constance.de EileenH

      Posted

      Eileen, do you know where I can find the article about 'normal' blood counts in PMR?

      I fear my doctor is beginning to believe I haven't got PMR any longer (I suppose after 4 years he is just skeptical).  He has never refused to give me Pred and, to my face, has never said he doesn't believe me.  He just wrote on a referral to the local 'Kurhaus' "PMR in remission".

      He is soooooo good when dealing with me that I don't want him thinking I'm a hypochondriac.

      I still have pain in shoulders, upper arms, wrists, hips, knees and ankles.  Of course they are not all PMR, OA and Gout are also responsible.  As you can imagine, I can't tell which is which by now.  Pain is taking over my life once again.

      I am really not feeling sorry for myself, I keep my humour and have a husband who is amazing.  I just want to understand!

    • EileenH
      EileenH constance.de

      Posted

      I don't necessarily think that means he doesn't think you don't have PMR - there are 2 sorts of remission. One is where the autoimmune disorder has burned out and gone into natural remission. The other is where the symptoms are managed by medications and is called "medication-induced remission". While you are on pred your blood results SHOULD be "in the normal range" - and it is very different from the blood tests being "in the normal range" at diagnosis. If they start to rise again then that is a different matter - the question then is whether you are on a high enough dose at present or whether something else is going on.

      Your German-trained doctor can read the bit about PMR in the standard German textbook - where it says the average length of treatment is 5 years so that means some take even longer.  There is also an article in Aerzteblatt where they say treament may be for life. If you are doubting your doctor's thoughts about you, then you need to ask him to his face and clear it up. It may be he is saying to the Kurhaus that he doesn't think the pain you have at present is due to PMR and what can they offer to make the rest better. 

      You have the chance to go for a "Kur" and to the pain clinic - take the opportunities. I'd give my eyeteeth to do either in your situation. I'm sure the rheuma Kur will look closely at the cause of the current pain.

      I'll pm you a couple of links though.

  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Saw the wonderful senior rheumy at St George's yesterday and she has now taken me under her wing as a "special case".

    Ultrasound scan of my temple arteries being booked, as there is some swelling. She also put me on blood pressure tablets, 5mg Amlodipine, as my blood pressure is way too high.

    She apologised for the original lack of response from rheumy's sec and said that it was a serious error and that changes in response to GCA patients had been put in place.

    I feel very good being under her care.

    And I'm full of energy! Off to my art class now. :-)

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