Mistakes in Pred, reduction.

[tomh]

Hi all. Diag. 7 yrs ago. Symptoms - continual dull headache, which moved across scalp, non-debilitating, tingling scalp when touched. Took 10 weeks for a Dr to diagnose, and that was only after I felt 2 small lumps on my right temple. Saw 4 Drs and 2 visits to Emergency after suffering blinding flashes in right eye. Told to see an optician. Wonderful. Received first class treatment at Bristol Eye Infirmary after confirmation biopsy.. Got down to 1 mg/d, following 1mg/d reduction /m. Had flare and upped to 10 mg. After 2 yrs emigrated to Rio de Janeiro. I have seen 4 Rhoomy's trying to find one with experience. Presently see a guy who seems ok. Within a few months, my CRP and VHS went haywire and was upto 15mg/d, down to 7/8mg/d, another flare and upped the pred. This has been going on for 5 yrs now in Brasil. I had double Pneumonia last NYE, and have just left hospital after another attack of Pneumonia. Had Bronchitis last Sept. Because my immune system is 'up the creak', of course, I am an easy victim for any air borne, contact infection. Have had many X-rays, MRI, Tomogrophy on my chest and Thorax, and lungs are in decent condition, except for a little emphysema after 50 yrs of smoking. Ceased the fags 5vrs ago following succesful vocal cord cancer op.No chemo., but 29 sessions of RT which damages body for sure. During these Pulmonary attacks my CRP has reached levels of 25mg/dl ( recommended is 0.5mg /dl). Have unfortunately increased Pred. on Dr advisement.My Renal function is not good, Creatinina at 1.5mg/dl recently. I am now self diagnosing on pred, intake, and basically only use the Dr. for prescription to get Blood exams. I am relying that the original symptom, ( or stiff neck, hip, jaw claudication) will occur if GCA revisits. Abnormal CRP and VHS are more than likely the result of inflammation in an old body. Hopefully? Thanks for reading, and any comments, good or otherwise, welcome.

[PMRpro Ambassador]

The high CRP when you have pneumonia is due to that - chest infections will send it up to the stratosphere! However - are they sure it is GCA and not another microvasculitis affecting lungs and kidneys?

Were you at Bristol in the days of Prof Kirwan?

[tomh in reply to PMRpro]

Hi PMR. I was at Bristol Uvitus dept 7 yrs ago. Had never had Pneumonia prior, and as I stated a biopsy was performed and confirmed GCA. The hospital I attended here have not said the lung infections are as a result of GCA. I was trying to explain that because I have now been on Pred for 7 yrs, my immune system I assume, has suffered, and the lung infections have been in the past couple of years. I am now relying on my own pre-diagnosis symptoms, regardless of CRP and VHS readings, as to to whether GCA is active and I should increase Pred. I also have osteo arthritis in left hip, need a new one, herniated discs in lumbar, and sciatica, and with the associated pain and inflammation, these are causual in high CRP and VHS readings. I have had Doplar on Kidneys and associated blood vessels, many MRI's ,Tomogrophy on lungs, and micro vasculitus never cropped up, even though Drs were aware of my medical history. They can be wrong of course. I cant recall the name Kirwan.