Flare up

So since the tapering down this past Thursday I started getting achy on Sat. but nothing to bad, by yesterday couldnt walk & pain in neck began getting worse, this morning neck in agony and groin now worse so I feel as though this is where it all started two months ago. Having slight head pain and it is so difficult to know that I was feeling 100% pain free up to the day the Dr. tapered me down to 5mil from 20. I go this morn for the blood work and not sure what he will do if they are normal or not to high.

I feel miserable and want to feel good again as we all do. I do feel some change in my eyes, I cannot read as long and things are slightly blurry but when I tell him I need to get on the higher does he's claiming that without definite proof of it being GCA he wont prescribe it and by the time I keep changing Dr.'s I could go blind so at a loss as to what to do. If I go to an emergency room at hospital will they automatically put me on the pred at the right dose?  Will they listen to me and treat me or just refer me out to a Dr., Im so afraid that time is of the essence and all the Dr wants to do is wait and wait for test results and wont act on my symptoms.

16 Replies

  • Shastring, when I finally diagnosed my own GCA and PMR. I had already gone to the ER a couple of times. I finally realized what was wrong...doctors had been of no help. Went to ER.....said I KNOW what it is and they instantly gave me 125mg Medrol. They also did labs....SED and CRP. Results were fine and have remained fine. During several Flares....I've taken the same action. I don't let them argue the point. Must admit, most of those times have been during the night. Mention your blurred vision, head pain....anything .Sounds like you need a new doctor....you will need an RX. The hospital may give you one but it will only cover you for a few days. When I ran out on that RX, I lost vision and hearing immediately. Never to return. Sorry to be so blunt....I know it's a scary time for you.

    BTW, the Medrol makes you feel wonderful within hours. Please don't delay too much. Go with what your body is telling you.

    Prayers are with you, CJ

  • Hi cjatthesea, taking care of it today, going for blood work in an hr, called to let Dr know I want immediate help today or will go to ER. Not taking any more of his non chalant behavior. Will keep you posted.

  • Good! Just keep strong.

  • Oh Shastring,

    So sorry to hear your news, but unfortunately not unexpected. 

    I can certainly understand your worry about eyesight, it's a very frightening prospect, but if he gets your blood test results back quickly and then acts appropriately you should be ok. 

    Having said that, if you are really worried - then go to hospital - I guess you're in US not UK, but assuming they act similarly, they will have the results of your blood tests within the hour, and taking account of your other symptoms will treat you. Impress upon them your fear of sight loss, if the Emergency Dept are like ours they can call upon a duty ophthalmologist to look at you. 

    I do hope you get some remedial action ASAP. 

  • Thank you DorsetLady going in an hour for blood work and just called to tell Dr.s assistant to tell Dr. that something needs to be done immediately or I am going to ER today. I will be one forceful advocate for myself if need be and not let this Dr. tell me any different so wish me luck.

  • I do wish you luck. But why is it always a fight to get listened to! Please let us know how things go for you. 

  • p.s. Shastring.  Apologies, I forget that not everyone here is in the UK and healthcare systems vary internationally!  But the same rules apply: if in doubt, seek emergency help and express your concerns about your sight  (as DorsetLady rightly says).

  • Hi markbenjamin57

    Yes I am going to stress to my Dr tomorrow how afraid I am of losing my sight, I mean he never started me on a high enough dose and now he tapered me down and it was horrible, I fell right back into the initial pain I had two months ago. If he had started me on the correct dose, if there is such a thing I may have been able to taper more successfully. Today was the worse, more pain that I could handle and therefore had my husband take me to the ER. Now that they upped the dose Im feeling so much better. Not sure what will happen when i go to see Dr tomorrow. Thanks for your reply!

  • Sorry you have had such terrible pain. Do you know what they upped it to ? Glad it has taken the edge off. Will be interesting to see what is done tomorrow. Please keep us posted. He needs to understand the SED and CRP mean very little. I believe something like 40-50% of us have normal markers. He needs to be paying attention to your symptoms....of course, you know that ;-)

  • Hi, I'm fully prepared to tell this Dr in a very calm way all I have learned about here. He keeps telling me that if the blood is normal than it is not pmr and could be something else. I think today when my husband and I talk with him and I don't like his attitude I'm going to go to someone else in another county.  He told me at last visit that normal or only slightly elevated results are indications of it not being pmr but clearly he is wrong. Will keep you posted after today's visit. Thank you!

  • Forgot to mention yes Im in the US.

  • Yes  guessed so , but doesn't matter where you are, we all want to treated as adults, which some of the medical professional seem to find difficult! 

  • I had a similar experience with my GP with (undiagnosed at the time) bacterial pneumonia a year ago, concurrent with the onset of (again, undiagnosed at the time) what turned out to be 'straight' PMR but could easily have been GCA as well.  The combined symptoms got so cripplingly bad that I had to insist on an urgent appointment with my GP to query their initial vague and inaccurate diagnosis of something unrelated. 

    As a result, the GP reluctantly (possibly because, if I understand it correctly, GP's get billed by the NHS for hospital referrals and only make them if absolutely necessary?!) gave me an immediate same-day referral to a walk-in emergency clinic at my local hospital and I got an on-the spot, accurate diagnosis of / treatment for the pneumonia, as well as a quite-high starting dose of prednisolone from my GP shortly afterwards (when pneumonia was eliminated from the equation).  My GP's speculative PMR diagnosis was eventually confirmed by a specialist: but only after a 12 week wait on the NHS.  In hindsight, had I known about the risks of GCA (and / or that I had been suffering with undiagnosed PMR for about 2 months), I would have pushed harder for immediate action or gone privately.     

    My opinion (for what it's worth) is this: if you are concerned about having GCA symptoms and you don't feel that your GP is addressing the situation urgently in terms of precautionary treatment, ask for an urgent appointment to discuss things or tell them that you will admit yourself to your local hospital as an emergency if they don't take you seriously. 

    From my experience (and from reading many posts here), some GP's are 'on the case' in terms of the potential risks of GCA associated with PMR and giving an appropriate and urgent level of steroid medication: but it seems that some simply aren't.  And, (as you say) due the time and hassle involved in getting a second opinion, it's just not worth the potential risk to your sight if you delay things. So, push, push, push...

    You might want also to check-out PMRpro's posts here since he / she seems to have a very high level of expertise in these things.

    Fingers crossed, and good luck.


  • She...

    Officially GCA is classified as a "medical emergency" - the same as a heart attack or stroke. In the UK, "even" paramedics are taught to recognise the possibility and take a patient to hospital. Unfortunately, it is when the patient gets there that the fight often seems to start. If you get a senior doctor in A&E then you are far more likely to get listened to, the more junior the more dismissive they often are. However, and this is a sweeping generalisation I know, in the USA the reception in the ER seems very often to be even less helpful.

    In the absence of sense from a GP or A&E/the ER a good second option in the UK at least in an emergency is an optician, of the sort who can do all the eye examinations, not just one who dispenses spectacles. That won't apply in much of the rest of Europe by the way. In the US it is probably an option to go to an eye specialist and in the UK if you live anywhere near one, an eye hospital which will usually have a walk-in specialist A&E.

    But probably the simplest reinforcement is to take someone with you to vouch for the state you are in - because that concentrates the mind of most GPs. 

  • Shastring, as DL has already said, this is really to be expected if you really do have PMR - rotten way to prove it though.  If it were me, I would be seeking a second opinion, and as an emergency if you now have head pain and are experiencing a problem with your vision.   Lots of good luck wishes.

  • Hope things go well for you today.  💚

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