A New Member to the GCA Club!

[anniekins1]

I have had about eighteen months of being prednisolone free, feeling really well and PMR seemed to be a thing in the past when I felt tired a couple of weeks ago and had a bit of a dull headache which is very unusual for me as I don’t really have them at all. I thought it may have been a cold coming as I was feeling so lethargic and broke out in sweats occasionally. A few days later no cold appeared but my head hurt when I touched the side of my skull or washed and brushed my hair, even the wind catching my hair hurt my head. I decided to ring for an appointment with the G.P and was told they were doing phone consultations at first and the next available appointment was for two weeks later. I explained I did not feel I could wait that long and she took my details to pass to the Dr who would decide if I needed to be seen earlier. The surgery rang back about twenty mins later and I was seen that evening.

Due to history of PMR and the symptoms I was given 40mg Prednisolone to start straight away. Had bloods the next morning and the results last Friday showed both inflammation markers were raised. The CRP level was 37 but I can’t recall the ESR level as she focused more on the CRP marker for this condition. Had to increase dose over the weekend as symptoms were still troublesome so now on 60mg daily.

Off to hospital tomorrow for an Ophthalmic assessment and I think the Dr also ordered a temporal biopsy but I haven’t heard anything about that as of yet. G.P did explain that even if I have a negative biopsy result l do have Temporal Arteritis due to the history, symptoms and raised markers. So another chapter starts with the dreaded Prednisolone but at least it will control the condition and keep my vision which is my main concern, the rest will be one step at a time.

Any advice you can offer from experience will be greatly received.

Thank you in advance!

[alvertta]

Good to hear you had speedy medical attention. All the best. I have had GCA since October 2018. Started @ 60. On 9 prednisone now. A long and winding road.

[DorsetLady PMRGCAuk volunteer]

Hi,

Pleased it’s been acted upon so quickly....

I had GCA, now been in remission for 4 and half years - and whilst the before was pretty horrendous, the during was okay due to the right amount of Pred at all times, and the after is brilliant.

Obviously large doses of Pred bring their own issues, but all are manageable.

This is a post I wrote after I’d gone into remission - might give you hope -

healthunlocked.com/pmrgcauk...

And this is a reminder of what’s to come - you’ll know some of it via PMR - but it’s a reminder - healthunlocked.com/pmrgcauk...

Take care.

[SnazzyD]

Great that you acted quickly instead of hoping for the best and well done that doctor for being equally on the ball. Hey ho, back to one step at a time.

[anniekins1]

Thank you for all the replies and it has given me optimism. I certainly found the post fromDorsetLady about remission very interesting so thank you for putting the link up again. Update on the eye test yesterday was not really conclusive due to the nurse installing the eye dilating drops before I had the Field test. She realised the mistake and I was rushed to the room for the test to take place ASAP. When the test was carried out on my left eye which was the last one the amber light was rather cloudy although it is the eye with better vision. Anyway lots of other tests done and then the feedback......On the screen the consultant pointed out black/dark areas on the outside of vision, worse in the right eye but both of a similar pattern which I was told indicates some nerve damage. I then explained about the drops being put in prior to the test being carried out and she said she was informed by the nurse this had happened and therefore she is not going to take the results as conclusive but will do the test again in six weeks to see if there are any changes.

Sending a request for a Temporal Biopsy to the Vasculitis team but it leaves a week for the procedure to be done as apparently there is a two week window for the test to be carried out after commencing steroid treatment. Then she said Easter is nearly upon us and they have to have a theatre available and the two week window is up on Tuesday. I feel it may not get fitted in due to timings but we shall just have to wait and see.

[PMRpro Ambassador in reply to anniekins1]

Sorry it has all come out positive in the wrong way - but good that they are managing it and keeping an eye on your eyes.

[anniekins1 in reply to PMRpro]

I guess it is a positive to be seen in these very strange times and at least there is a double check on the results which is a good thing for sure!

[DorsetLady PMRGCAuk volunteer in reply to anniekins1]

A bit of an anxious Easter for you then, but at least the 60mg will be helping. Take care.

[anniekins1 in reply to DorsetLady]

I am trying to just take things easy and avoid worrying too much as I doubt it helps anything. Have a good Easter!😀

[DorsetLady PMRGCAuk volunteer in reply to anniekins1]

Will do, have son & family coming over on Sunday (in bubble) for cream tea ( birthday).

[Jackoh in reply to DorsetLady]

Hope you have a lovely birthday celebration! X

[DorsetLady PMRGCAuk volunteer in reply to Jackoh]

TY🌸

[Stellamavis]

Your situation reads like mine... called to Gp surgery 40 mins after his call back...sent my stress level soaring but am calmer now...thank goodness for this site it is very informative allowing me to digest and take in what’s related to my symptoms and not feeling rushed about certain decisions may or may not take in this journey.