If you have GCA now, when were you diagnosed? Ple... - PMRGCAuk
If you have GCA now, when were you diagnosed? Please reply - this will help us on Tuesday at the NICE meeting!
PolywotsitPMRGCAuk team member320 Voters
Actually I was diagnosed about 18 months ago.. also have PMR but now down to 2.5. mg Prednisone and take monthly infusions of Orencia... not sure how much info you want?
Can you please tell me what GCA and PMR are??? thanks. It sounds terrible.
If you don’t know what PMR (Polymyalgia Rheumatica) and GCA (Giant Cell Arthritis) are, then I wonder why are you on this forum?
Read this, it may help - healthunlocked.com/pmrgcauk...
Www.pmrgcauk.org.uk
Initially diagnosed with PMR in May this year then GCA in August.
Hi Kate. End of May 2017 for myself. What a mystery it is. Lucky to have had GP referral to QE Birmingham Eye Consultant after usual painkillers didn't touch it. Temporal biopsy was positive. Pred. is a very effective painkiller but has bad side effects for myself. Too rapid reductions in dose has resulted in having to go back to the previous level that prevented relapse. Keep hitting problems at 15mg. Originally at 40mg. for 4 weeks. Reduced to 20mg. over 2 weeks because of severe mood swings & delusions! This new treatment would help to taper the pred. down to minimal safe level. Thanks for your experience & effort. I'm still catching up on all this. Along with some of the professionals I think!!
Have made an amazing recovery after 18 terrible months due to Actemra
That's great to know Christine. Could you tell us more about your experience? You could private message me if you don't want to post here. Thanks.
I first experienced the symptoms of GCA last year in early April. It started about a week after I first felt the symptoms of PMR. I was first diagnosed with both conditions on 31 July.
Not sure if you want more info. Diagnosed after biopsy, in May, prescribed 60 mg, for 8 weeks then reducing by 5mg per week until 15mg. Then tapered more slowly. Now on 10mg, planning to reduce by 0.5 slowly. Maybe every 8 weeks or so, assuming Rheumatologist happy with that. Stopped the AA after 4 weeks, likewise the Calcium A’s bone density ok. No flares so far.
I was diagnosed with GCA and PMR in July 2015 following a month's long illness. Currently on 9.5mg daily of Prednisolone and 10mg of Methotrexate taken by weekly injections, the latter having started in the Autumn of 2017 as I was struggling to reduce the Prednisolone to below 12mg. Symptoms are currently under control to an acceptable level for most of the time.
I was diagnosed with GCA and PMR in November 2010. Each time prednisolone reduced cannot get below 5mg. Have had flare ups resulting in increase of dose. Now on methotrexate alongside prednisolone to hopefully enable me to come down further.
Diagnosed in August 2016 by Temporal Biopsy - started on 60mg reducing to 40 over 6 weeks with awful side effects. Took methotrexate for 4 months when on 22mg as struggling to reduce, stopped as it made me feel so ill. Now have managed to get to 9.5 still feel exhausted and ill if I try to lead just half a normal life.
73 yo female, ill since Fluvax in 2010, finally diagnosed PMR in 2014 and given Prednisone. I had managed to reduce Pred to 3 mgs/day by August 2017 when 'flare' occurred with headache and jaw claudication. Subsequent temporal biopsy was positive for GCA. Pred upped to 75mgs then down to 50mgs by Janurary 2018. Currently having problems getting below 45mgs before symptoms return and considering using Tocilizumab.
Diagnosed with GCA in hospital after having a stroke on 11/16. Stroke occurred while I was searching for answers from doctors, dentist, emergency room of local hospital, etc. as to what was wrong with me over a course of four weeks. Had temporal biopsy in hospital which was positive for GCA. At the present time I am dealing with post stroke symptoms (right side is virtually useless) plus terrible side effects of Prednisone too numerous to list. I have gone from being a healthy, independent 76 year old woman to a physical and emotional wreck. I am in the United States and health care here with regard to GCA is sub standard to say the least. All of my info comes from websites in the United Kingdom for which I am grateful.
I too had a stroke caused by GCA. My GCA diagnosis nov 10, 2017 when i lost partial vision in left eye, treated with 80mg prednisone; and 20 days later had a left brain MCA ischemic stroke caused by the GCA, per my stroke doctor and rheumatologist. Fortunately right side damage was limited; right arm recovered in a few days but right hand is impaired. I'm still living independently, in N Calif. Folk dance is a hobby and still able to dance. My sister was diagnosed with GCA in 2010 losing sight in one eye. Also PMR and recently aortitis requiring heart surgery. Sorry to hear of your situation and hope it improves with therapy.
Kate,
I was diagnosed in August of 2016 with GCA and PMR after I lost the vision in my left eye temporarily, but I believe I had it in May of 2016 but they could not figure out what it was (my CRP and ESR were very high and I was in pain). I was put on 60mg of Prednisone and in a day my vision and the pain was much improved.
June of 2017 I started Actemra/Tocilizumab and I feel it is very effective. I am now on 10mg of Prednisone and Actemra. I hope this helps.
Enan
Diagnosed in Spain whilst on holiday February 2017. Confirmed 10 days later at Margate hospital ten days later with a biopsy.
I was diagnosed with PMR/GCA In September 2017 although a biopsy was negative as already started on 60mg of pred. Now tapered to 12.5mg and feeling ok. Im travelling around Australia and my Rheumy wants me down to 10mg on my return in April which i hope to do at .5mg a time. Fingers crossed for a smooth passage!
You controlled really good. May I ask your feeling during the day? I always feel significant pain (not stiffness) in the morning hours. I can feel the pred starts to function in the afternoon and the pain is much relieved (never completely painless though). I started with 25 mg daily since Jun 2017 and my tapering down is now smooth. The lowest dose was 8mg. I am now back to 15 mg. If you can share your tips I would appreciate it. Thanks.
Can i ask, due to have headache symptoms the age of onset when you guys were diagnosed. I am a 22 year old male with a three month long illness of similar symptoms, ive been told i wouldnt have TA or GCA due to my age but im not too sure of its that true
It is extremely, I mean extremely, unlikely that you could have GCA. But you may have any of a number of other possible problems. If I were you I would stop worrying about GCA and go look for another diagnosis. e.g. there is a condition called Crowned Dens syndrome that can cause very similar symptoms. Good luck!
Thank you i guess this three month mystery ilness has me digging up ideas that even myself think are abit odd. Just constant all day everyday headache with some lapses of relief that will last nearly a day or so, facial and jawline tightness and body aches aswell as eye pain. Ive had nearly every blood test under the sun and 3 brain scans and whatever this is continues go allude me.
Diagnosed with PMR and GCA in Dec 2012. Came off pred, inflammation up. Pred and Methotrexate. Came off - inflammation up. Never any symptoms of either condition when I came off the medication. Because of high CRP the second time I came off medication I had a PET/CT scan in August 2016 showing aortitis in major blood vessels in chest. Still no symptoms so no idea if I still have it or not. Put back onto Metoject and Pred (starting at 40mg). Now off the Pred (since October 2017 but still on 25mg of Methotrexate by injection. I am now 71, was 66 when diagnosed.
diagnosed Aug 2015 at Basingstoke hospital after severe headache, weight loss, blood tests, and eye problem, - biopsy negative (surgeon insisted doing opposite to pain), ultasound positive. Started 60mg, now on alternate days 5mg for 3 months.
Diagnosed with PMR and GCA nine months ago. Now on 12.5 daily preds and 15mg weekly MTX. Following strict (no sugar, no salt) regime as drilled into me by French healthcare team here. Have had a couple of flares when trying to reduce preds but in general everything going really well - can lead a normal active country life. Seem to be losing hair on Methotrexate- does anybody else have this?
Am still on Pred and MXTO but how do I actually know whether I still have GCA?!
Diagnosed in December 2012 after 15 weeks with a severe headache which had been treated as cervical spondylitis. Started on 60 mgs prednisolone, the addition of methotrexate after 18 months didn’t help much. Aizapriothene was much the same. Mycophenolate has been more successful in that I have been prednisone free since October 2017. Physically I feel dreadful, muscle pains in arms, shoulders, hands, hips and thighs but mentally I feel so much better. The fog has lifted and I can think clearly again. Still on mycophenolate and hoping...
GCA 12 years. Diagnosed Adrenal insufficiency June 2017,when on 2mg Pred, and feeling very well, with NO tiredness, and still no tiredness.
I was diagnosed with GCA in June 2016 and then with PMR in November 2017.
Hi Kate,
I was diagnosed with GCA in December 2015 and managed to taper prednisolone to zero by July 2017. During this time I had one PMR flare. After completing treatment I was discharged by my rheumatologist to primary care. I did have some 'aches and pains' and was told that this was due to steroid deconditioning. In the last five months I have experienced bad pain and stiffness, which I became increasingly convinced signalled PMR. However, my GP did not agree with me as my inflammatory markers were not elevated when measured at the end of August and in October. Blood tests taken in December, however, did show raised values, and at a consultation this month my GP diagnosed PMR and prescribed 15mg per day of prednisolone. This gave almost immediate relief of most of my symptoms. I am due to have a phone consultation this week for a review and I shall ask to be referred back to the rheumatologist.
Diagnosed with GCA March 2014 after months of awful headache, jaw ache and numbness on the r/side. Ultra sound and bloods proved positive, biopsy was negative but I'd already started on 50mg daily of Prednisolone. Was diagnosed with PMR 2016 as suffering with terrible stiffness in the neck, back of head and shoulders going down the spine to the hips. Got down to 3mg pred. daily in September 2016 and cannot get lower without flare up symptoms. I do suffer withdrawal symptoms each time I've tried to reduce to told to stay on 3mg daily as okay! I'm waiting to feel well enough to start reducing by 0.5mg daily on a SLOW programme, hoping this works.
I was diagnosed with PMR July 2015 then 3 months later in October, GCA developed. 1 flare in August 2016 of PMR, now on DSNS at 6/5.5mgs.Good luck...
In 2012 after 3 months of horrendous headaches and been seen by a Consultant who diagnosed Neuralgia there was no improvement so my GP organised an urgent appointment with a Rheumatologist, who within minutes, diagnosed GCA and prescribed 60 Mg Pred, pending confirmation by Biopsy. As I was having problems with my sight and a couple of days prior to seeing the Rheumatologist had a mini stroke, I was admitted to Hospital after the Biopsy and given 90 Mg Preds intravenously. After 4 days in Hospital the Preds were reduced over 4 years down to zero and everything was ok for about 6 months. Since October 2016 I have had 2 Flares and am currently down to 10 Mg Preds reducing by 1Mg a month.
Gwenda 42
I forgot to mention that I was aged 60 when I was diagnosed, which may help with your statistics. Please let me know if you would like any more information. Good luck at the meeting.
I did not have eye trouble just a raise in size of Aorta. This came after getting down to 1m Steroid after 3yrs of PMG
I was diagnosed at regular Rheumatology appointment at the end of May 2017 and started on 60mg Pred I have now tapered down to 8mg. The only serious side effect was an increase in blood sugar levels. Leading to a diagnosis of type 2 Diabetes. I also take 20mg methotrexate by injection plus other meds for Rheumatoid Arthritis.
Diagnosed Dec. 2014 during this time I have had three flares now at 5mg.
I was 62 when diagnosed, April 2015. I had been feeling very unwell for several months before. Started on 60mgs of pred. Now taking 5mgs. Long and unpleasant road to hopefully a good recovery. Thank you for supporting us all, this is so appreciated.
Headache started on 23rd December 2013 but diagnosis wasn't done until 27th January 2014 and biopsy confirmed on 3rd February 2014. 60 mg Prednisolone started on 27th January.
Colin Elmes
Diagnosed with GCA in A&E in June 2016, aged 77. Given Prednisolone 60mg and referred to Rheumatology. Biopsy proved inconclusive. Horrendous side-effects of preds. - mania, paranoia, weight gain, hair loss - you name it. Been tapering ever since with a few brief 'flu type flares on the way. Now on 2.5mg and reducing by 0.5mg a month. Feel ok now.
Diagnosed with PMR December 2012. On Prednisolone around 16 months starting with 15 mgs a day dose. Came off them for about 18 months then back on after relapse 2016. Felt fine 2017 until visual disturbance with shadow in left eye October 2017. Did not relate to GCA as no symptoms. Went to opticians 3 days later and referred to eye clinic at hospital put on 60 mgs Prednisolone same at hospital but already over the 5 days since first noticed the shadow too late to prevent sight loss in left eye due to inflamed optic nerves. On Prednisolone to help protect good right eye. Originally on 60 mgs for 7 weeks, reduced to 40 for 4 weeks, then 30 for 3 weeks, then 20 mgs Had bad pain at back of right eye 2 weeks ago, went to A & E. Had steroids put back up to 60 mgs for 5 days, now on 40 mgs for 2 weeks, with a planned 5 mgs reduction every 2 weeks.
With having no warning symptoms of GCA, so unable to know if dose of Prednisolone was too low, feel this slower reduction is more sensible. Lucky the scan after A & E showed no right eye damage, and lucky I took the pain to mean something was wrong.
Diagnosed beginning of June 2017, after a trip to Australia. Had not felt well for a few weeks prior to this. Apparently I was a classic case. However biospy 4 weeks later was negative but I had been on 40 mg ofprednisalone for 4 weeks. Have had headaches but consultant says due to stress as my husband had a mild stroke in July. Blood count is good and am now down to 6 mg and feeling much better. Had 10 days in hospital in September with a possible small coronary but angiogram showed no damage. At first the prednisalone affected my memory badly and I felt as if I had early althzeimers which was very frightening. However I feel really good now nd have lost nearly a stone since Christmas. I think that I had nearly every side effect listed for prednisalone including diabetes, but I would say to ecveryone, hang on in there it does get better and am very grateful for being diagnosed early so that my sight was not affected
It sounds as though you are doing fantastically well!
CAraid2011, You controlled really good. May I ask your feeling during the day? I always feel significant pain (not stiffness) in the morning hours. I can feel the pred starts to function in the afternoon and the pain is much relieved (never completely painless though). I started with 25 mg Pred. for PMR daily since Jun 2017 and my tapering down is now smooth. The lowest dose was 8mg, but it does not work well. I am now back to 15 mg. If you can share your tips I would appreciate it. Thanks in advance.
I don’t have PMR just aching legs. But do feel very tired on prednisalone and memory is still not good. Sorry that I haven’t answered your question but hope that you can decrease predict. Soon without pain
Thank you very much for your replay.
I was diagnosed with GCA in April 2015, age 62. First symptoms actually appeared six months earlier (jaw pain). Had two flares in the first two years of treatment. Stopped steroids 10th October 2017. Woke up two days later with shoulder and groin pain and was diagnosed with PMR. Started on 10 mg and now down to 6 mg.
I was diagnosed about five weeks ago after waiting two years, I was sent for a second opinion, and they found it.
Have been ill for some years with PMR but diagnosed with GCA or Large Vessel Vasculitis and started on 40mg prednisilone in April 2016. I have tried methotrexate which didn’t work, then Leflunomide but can’t reduce below 15mg steroid without flaring. Altogether I have taken steroids for 8 years.
29th April 2015
I was diagnosed with GCA on the 18th of April 2015. I also suffer from PMR.
Diagnosed in May 2017
I was diagnosed in October 2016 with GCA confirmed by biopsy several weeks later. Vision in my left eye is impaired due to late diagnosis. Started on 60mg Prednisilone, slowly tapering. A flare in February 2017 slowed this down. In mid June 2017 I was prescribed mycophenolate in addition to Prednisilone. In mid November 2017 I was prescribed Methotrexate instead of Mycophenolate . I certainly feel much better although very vulnerable to any infection going around.
Had to give up work. At my age, will I ever be able to find employment again. Feel pretty useless.
Diagnosed July 2015. Started 60 mg preds Reduced gradually to 8 mg but symptons returned plus blurred vision. Put back up to 40mg preds plus 20mg methotrexate...got down to 2mg preds but pains all over...feet hands shoulder back legs and head. Back up to 10 mg press and 25 mg methotrexate. So here's hoping😥😥
Female, 63 years old, officially diagnosed with GCA in December 2017. Started on 40 mg of Predniolone, no relief; increased after 1 week to 60 mg. Started reduction after 2 weeks, reducing by 5 mg every 7 days, till I got to 45 mg where I experienced terrible flare. Increased Pred to 60, no relief, had to Increase to 80 mg. On 80 for 10 days now, reducing by 5 mg every 10 days. Currently on 75 mg after being diagnosed 8-9 weeks ago. I am no longer able to work, or volunteer at the local hospice. The side effects of the Predniolone are worse than the disease. My whole life has been turned upside down. I was a very young, active, on the go 63 year old. I am not very hopeful about my future success with Predniolone and need options to get my life back!
I was diagnosed 4/17. It was my eye doctor. I had double vision, and general fatigue.
I was diagnosed in Oct 2017 with GCA & PMR symtoms aged 64. Started with headaches, neck and back stiffness, Pain over left eye. Temporal Biopsy unsuccessful in Sept. Tapering down to 15mg pred now. I get all the information from this sight as Doctors still seem unsure of many questions...like how often should I have a blood test?
GCA November 2016. After two flares through tapering too quickly still only down to 28.5mg Pred. Life at a standstill feeling ill all the time and never knowing if I can function each day.
Hi Kate,
Not strictly in the group any more, but a bit more info, if helpful.
Diagnosed April 2012 (age 65) after 18 months of misdiagnosis of frozen shoulder. During that time ‘classic” symptoms also present, extreme fatigue, achy upper joints;
in last 2 months prior to diagnosis - tender scalp, jaw claudication, headaches, neck pains (although no enlarged nor painful temporal artery);
last 4 days - blurriness in right eye, starting at bottom extending to full coverage.
Diagnosed in A&E by Ophthamologist (very quickly realised GCA) -no TAB deemed necessary -started 80mg oral Pred for 2 weeks, until sure other eye ok. Then reduced to 60mg. Continued reduction, mainly at 4 Weekly intervals, sometimes more depending on personal circumstances. Once below 7mg started slow tapering method and 0.5mg per drop,
Took last Pred September 2016. Sure GCA had gone into remission 6 months prior, but continued on tapering regime.
Very little involvement with Rheumatologist - initially treated by Ophthalmology Dept then referred back to GP
Total lifespan of GCA -5.5yrs
Total time on Pred - 4.5yrs
Additional medication - Alendronic Acid 70mg - 4 yrs; Calcium/Vit D - Apr 2012 to present)
Aspirin 75mg (already on for HBP, still taking)
Residual GCA affect - loss of right eye
NO FLARES (attributed to slow and sensible taper, and maybe good luck!)
I was diagnosed with PMR in October, and GCA in November, after an amourosis fugax incident. Was put on IV steroids for 5 days, followed by 6 more amourosis fugax incidents in the next 2 weeks. Then started on 100 mg prednisone . Tapering started the end of December, and I am now on 40.
I am worried about the high doses of prednisone, however equally as worried about the side effects of Actemra, and methotrexate.
Diagnosed with GCA Feb 2017 after having what I thought was a bad dose of flu. Every joint in my body aching, etc also blurred eyesight, which resulted in visit to opthalmology - permanent loss of 75% vision in left eye discovered. Started on 80mg steroids, alendronic acid, omeprazole, Dcal, aspirin, etc. Been reducing by 1mg per month ... now down to 6mg, but symptoms starting to reappear - visit to rheumatology imminent.
Female diagnosed at the age of 65 in Feb 2017 with PMR - really 'self-diagnosed' after several trips to docs previously with unexplained symptoms getting worse over previous year. This was followed in April 2017 with another episode of having to convince my GP (who admits had never seen a case) that I had GCA as well with increasing headaches and facial pain highlighted after tapering (much too quickly) from the high dose of Pred (50mg for 3 days) initially given to me for just PMR !! When I was down to 17mg the GCA symptoms emerged. Think I had symptoms of PMR/GCA for at least a year prior to dx. Currently tapered to 14.5mg after one 'flare' when reaching 12.5mg.
Diagnosed Jan 2014 GCA got down to 1mg pred amonth ago now back to 5mg due to pain.
Diagnosed GCA March 2017 after intense headaches and then positive biopsy. Started Pred at 40mg and went really well until I reached 6/7 mg in October and small nightly headaches reappeared and CRP started to rise again. Increased to 15mg for short period and now back down at 8/9mg and going to take the reduction much more slowly.
Should have added Female and 60 years old.
My GP was quick to spot that I had PMR but did not diagnose the GCA. My pain is not in the temples but down the right side of the back of my head, plus very painful and tender scalp and pain opening my mouth wide. It was the rheumatologist, a month later, who recognised the symptoms.
Hi I was diagnosed with PMR at the end of 2014. This developed into cranial GCA beginning of 2015. My steroids were upped from 10.5 to 21 mg which did control head pain. For a year I was unable to get any lower than 19mg without head pains returning. At this point my Consultant Rheumy put me on Leflounomide. On his advice I have been slowly reducing 1 mg per month and am now ( Jan 2018- 2 years since the onset of GCA) at mostly 16 mg. It is a long journey!!
Confirmed GCA (via ultrasound scan) and PMR in August 2016 after nearly a year of trying to determine what was wrong with me. Immediately on Prednisolone and Methotrexate added two months later. Had a reasonably quick (some would say two quick ) tapering programme. Was down to 4mg of Prednisolone when I had a very serious flare combined with Bells Palsy in July of 2017 just less than a year after my GCA confirmation and had to go back to 60mg of Prednisolone per day (also on Methotrexate 25mg per week at that stage). Been tapering since then but at a slower rate than the first time round
I was diagnosed in December 2012 and on prednisolone for nearly 3 years. I am still suffering from balance issues which affects my every day life. I cant go out on my own, I have lost all my confidence and suffer from anxiety, GCA changed my life completely.
Details as requested.
Diagnosed GCA November 2016, a month before my 70th birthday. Sudden onset severe headaches, at their worst early morning, along with scalp tenderness, some jaw pain, and persistent extreme fatigue. Blood test - ESR 86. 40mg prednisolone prescribed, plus precautionary Candesartan, Adcal and aspirin.
After a few days my blood sugar shot up (steroid-induced diabetes) and I was also put on Metformin, Alogliptin and Repaglinide.
Went through a very difficult time adjusting to the diabetes and its treatment, in addition to the GCA plus the other prednisolone side effects, esp extreme muscle weakness. Persistent fatigue even worse, if anything. Discovered the necessity to go on a minimum-carb diet. Had a few hypoglycaemic episodes as I gradually learned how to manage it all.
At some stage I was referred to a rheumatologist, who confirmed the GCA diagnosis and wanted to put me on Methotrexate, preceded by Zolendronic Acid. I had read up on these and declined, preferring to keep them as a last resort. Once I declined his proposed treatment, the rheumatologist seemed to lose interest, and I haven't seen much of him since. (Though the GPs seem to think he's 'in charge' of my case - which seems odd as he never sees me.)
Meanwhile the state of my digestive system became dire. I was given Omeprazole, but it didn't help a huge amount, and I worried about the possible long-term effects. I changed to enteric-coated prednisolone. I stopped everything that seemed hard on my stomach (except prednisolone of course), including Adcal and aspirin. But it got worse and worse, until I was literally rolling around in agony from acute gastritis. (I felt the GP was negligent in not taking this seriously.) Luckily my husband, who is an endocrinologist specialising in diabetes (and could see the state I was in) realised that it might be caused by the Metformin. Once I stopped Metformin, the gastritis improved rapidly. Dapagliflozin was then added to replace the Metformin. A few weeks after that I stopped Omeprazole, and since then take only occasional Zantac or Gaviscon, as required.
Because of the steroid-induced diabetes, I am keen to reduce the prednisolone as quickly as possible. I did have a couple of flares during the first half of 2017, and eventually realised the need to reduce more slowly than the conventional NHS pattern. However I have persisted, half a mg at a time, and am now (15 months in) down to 8mg. Getting down to 7.5mg seems tricky - usual return of extreme fatigue - but I shall keep trying.
I haven't had the severe headaches or the jaw pain for quite a while. Blood sugar still tends to be a bit high, but not nearly as bad as earlier in the proceedings. I still have muscle weakness, but no longer as disabling as it was. The most persistent and debilitating symptom is the fatigue. I have little stamina and often feel exhausted. I can get upstairs, but only slowly. I can't walk far - slowly, for not much more than half an hour at best. I lost a lot of my hair. From a lively, active person in her sixties, GCA has turned me into a stereotypically inactive, 'little old lady'. I do hope to make some sort of comeback, sooner or later, but am not sure what the chances are. Fingers crossed.
Maureen A
89 years female, symptoms of GCA diagnosed by very competent GP,immediate referral to Rheumatologist prescribing 40mg predisalone giving relief, Jan.'16. Reductions as advised by rheumy. then following reduction plan suggested by this forum. Very little contact with GP as the forum provided reassurance and information. Sincerest thanks to all contributors sharing experiences as I had many of the side-effects of the pred. Now down to 2mg (at 1 mg some pain started so upped dose to 2mg. Feeling more "normal" self thankfully. Best wishes to everyone.
I was diagnosed with PMR at beg Feb 2017 with GCA following about 10 days later. Confirmed by an biopsy on around beg of March. As I had started very high pred the RHUMATOLOGIST said it must have been bad! I have had a hell of a journey so far including shingles. Now had relapse and back at 50mg with coldy flue and in bed for days. Difficult in waiting rooms with so many germs about.carry on, keep peddling.
Thanks
Di
I was diagnosed in June 2016. Biopsy was negative, started on 60mg prednisolone, now down to 2mg. It’s quite a roller coaster.
Today !
Oh gosh! Welcome to our community. You'll find we are here for you every step of the way.
Diagnosed in Feb
Diagnosed in February 2016, relapsed two weeks ago.when steroids were taken down to 3mg
Diagnosed in May 2016. Despite dissected aorta ? due to GCA exactly 1 year ago now down to 2mg pednisolone- blood tests next week
I was diagnosed April 2016 Kate. Gaynor
I was first diagnosed 10 years ago - but thought it was gone after about 3 years. Sadly, about 3 weeks ago I was diagnosed with it again
Only recently June 2018. Hospital kept discharging me even though CFR was high (180 discharged when down to 100 back in again 2 weeks later 140). Rheumatologist was eventually asked to take a look brought CFR down to 30 within 3 days. Trouble was everyone who saw me had a different approach. I was on steroids for 1 day when in first time and someone decided to take me off them! I am so glad Dr. Ahmad found me and sorted this dreadful illness out.
1-2 years.
Kate
I asked the rheumatology consultant I saw in July at Taunton/Musgrove Park Hospital if I could be considered for toxillazumab treatment now that it has been authorized (for 1 year) for GCA patients. The answer came back NO! Not surprised at all, but I wonder how many GCA patients have been accepted for the treatment since the NICE ruling in March? If not enough are given it how can any worthwhile data on toxillazumab in the treatment of GCA be compiled?
Thanks so much for all your efforts on our behalf. It is greatly appreciated.
Judith Payne
Mine was first diagnosed in November 2017, while I was losing the sight of my right eye. It was earlier misdiagnosed as trigeminal neuralgia. I later found that I didn't have the symptoms of trigeminal neuralgia - but I did have the classic symptoms of GCA.
Diagnosed by Dr on A&E where I went at 8pm Sat June 2017
With a really bad headache over foreheads and blurred vision. He put me on pred 60mg and said to visit my Gp mon
Now done to 10mg pred plus
Omeprazole
Folic Acid
Adel-D3
Methotrexate 25mg
Alendronic Acid
Atrorvastatin
Nitrofurantoin
Pam
I was diagnosed very quickly in Dec 2016. Age 75. ESR 107 CRP 6.2 and climbing. Started on 15 but Rheumy upped it to 20 after 2 weeks. One minor flare 4 months later at 14. Back to 20 but steadily down to 5 since then . I'm taking Rayos and have used dsns 38 day taper since 9 mgs. Starting down to 4 mgs tonight.
Thank you very much for all you have done for this community.
Have had pmr for 3 years, then gca summer 2017. Have now started Actemra.
Hi Kate,I was diagnosed July 2018 stated on 60 preds an now in midst of flare up ☹️But now have a great new rheumatologist so a lot now to be thankful for , biopsy was negative,if you need any more please contact me 🐒
Hi Kate I’m not sure how much info you need, but was diagnosed in July 2018 with a negative tab result .started on 60 preds but at present am in the midst of a flare . If you need any more please let me know 🐒
GCA diagnosed almost exactly 2 years ago but large vessel arteritis, affecting all major arteries, diagnosed by PET-CT scan November 2018 ( no symptoms at all for 2 years, problems only indicated by suddenly-increased ESR and C-protein in September 2018).
16 months ago Feb 2018
GCA 17 Months ago - PMR 20 Months ago. GCA started at 60mg Pred - now down to 8.5mg but recently over past 6 months experiencing several UTI
Hi GCA presumed diagnosed 13th April 2019 started on 60mg pred
19 months ago.The voting buttons aren't working!
I was diagnosed the end of December 2018 60mgs of steroids saw a consultant doctor in the July and another consultant in Nov. Big big struggles with the medications Felt very very alone at 82 Am now down to 5mgs of pred and methotrexate 6tabs a week plus prednisolone induced diabetis metaformin and I have anti coagulation Rivaroxoban I lost weight. No blood test at present cancelled. virus c19. Have been quite unable to speak to Rheumalogy dept. Tried 3 mornings running managed to get a gp and on the phone he felt I may have vertigo as well I have dizzyness Asked Gp once did he feed back to NICE answer no. Problems with lips as well was under hospital it was I feel due to preds.
GCA diagnosed by Dr. Mackie April 2020.
Diagnosed GCA 2013.
Pmr I think about 4/5 years ago no treatment Numerous dr appt . Had sight problems in Thailand where I live 6 Months of The year. Came home after 3 months 22 January 2020 as I had numerous problems In the 3 months with sight and pain and weight loss. My sight still wasn’t good went to dr 23 January 2020 dr rang ophthalmologist on call at hospital who put me on 60 mg immediately said I would get a emergency appointment. 8 weeks later after my new doctor pushed and pushed they brought appt forward mri scan ophthalmologist appt I was told no Gca asked my rhuemy To looked at my head as it was covered in lumps inflammation and sore to comb hair.......he said stop scratching your head I was so angery. Results no Gca by this time Pmr seemed to be tapering off and tolerable. Neurologist asked to look at my mri scans and diagnosed Gca he could see halos. Urgent call from rhuemy to say Sorry I did have Gca he has now left hospital. So From March this year My journey started. Due to Corona I have had no contact with any rhuemy no replacement for one who left. Rhuemy put me on methotrexate under the guidance of rhuemy nurse before he left also AA and folic acid. Dose was 10 the 15 20 mg at which point I had to stop mtx and AA due to so many problems.....Sliding hiatus hernia awaiting op.......breathlessness and Abdominal problems also waiting for cataracts op on both eyes. Felt like death, since may I have onLy been on 0nly prednisone tapering from 35 to 20 think I had a relapse at 20 as symptoms came back temporal pain frozen kneck pain tremors,shakes in hands and legs. Had to ring Pmr/gca Uk last week as I was in a lot of head pain and lumpy scalp went up to 25 mg prednisone but by Sunday in agony when up another 5 the symptoms subsiding a little now bloods being down Friday 26 I have to ring nurse for results on Monday to see how inflammation markers are. I am so scared as I feel I have been left on my own if it wasn’t for this forum I don’t know what I would do. Sorry to ramble on so much who do we turn to. Thank you.🙏🏽
I was diagnosed with GCA end of June 2019. A biopsy was easily able to confirm this end July 2019, even though has been on 60mg Pred for 3/4 weeks. Have been struggling to taper the steroids, even with now also being on Methotrexate and Actemra.....not an easy case, apparently. Had a few flares .....always occur in range 19-17mg even though have been trying to taper more slowly every time and currently on 25mg again, hopefully going down but even more slowly this time. At least being on the Actemra has allowed me to taper to these dose levels as before that, could not taper at all, so Actemra is helping me even though not to same extent as others have experienced.
