I was diagnosed with PMR in April this year and was prescribed 15mg Pred which worked its usual magic. Then in August I was diagnosed with possible GCA and the dose increased to 40mg. Since then I have struggled to taper, even by reducing in 1mg stages and am still at 30mg. However, I am suffering with a myriad of side effects - 1) skin so thin that the "red spots" which are now on my legs as well as my arms are bleeding and taking a long time to heal, 2) increasing difficulty with my breathing, 3) dizziness when moving, 4) sweating which leaves me feeling as if I've been in a tropical storm, 5) raised resting heart rate - 6) and to say nothing of the fatigue!! As my next appointment isn't until February, I decided today to see a doctor at my local practice. All I wanted to know was whether I should be concerned by the side effects and whether they needed further investigation. The doctor who I've previously seen agreed with my slow tapering and was happy to prescribe 1mg Pred but I saw a locum today who totally disagreed with "not following the plan" as she described it! Instead I was told I should have been following the rheumatologis's plan and that she wasn't prepared to get involved because I shouldn't be on such a dangerous drug for such a long time. She then said she would write to the rheumatologist herself and ask for me to get an earlier appointment. I left the surgery feeling both depressed and angry, then decided I would contact the hospital myself. There are two support nurses in the rheumatology department and, having left a voicemail on their phone, one of them called me back within a couple of hours. Unfortunately, there are no appointments before my next scheduled one in February but the nurse listened to my concerns and then said she would call me back after she'd spoken with the rheumatologist, which she did. Unfortunately, it turned out that the rheumatologist was only interested in getting me back on "the plan" so she's expecting me to to get from 30mg to 15mg between tomorrow and 1 February. When I pointed out - tactfully! - that this would mean I would be reducing by more than the recommended 10%, I was told it wouldn't be a problem because my CRP levels were running well within normal limits. At this point, I decided I was batting my head against the proverbial brick wall and just gave up😡
Once again, even though there is so much evidence that this illness has a will of its own, some members of the medical profession still refuse to accept this. So, I will continue to listen to my own body and be guided by my symptoms- and face the consequences when I actually get to my appointment at the beginning of February. I'm just disappointed that I'm not getting any advice regarding managing the side effects. Please wish me luck - I'll let you know how I get on 😉
Jan
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I've actually reduced by 2 or 3mg at a time but have had to go back up on two occasions because the GCA symptoms returned. My plan was to start reducing again by 3mg as from tomorrow and see how it went. I only went to the doctor today because I'd read on this forum that certain side effects e.g. breathing problems and raised resting heart rate should be investigated because they're not necessarily only steroid induced. I shall have to be patient and see what happens.
Yes you really do need to be checked. How long did you stay at 40 mg? That is at the low end for GCA treatment so you might have needed to stay there a bit longer before any taper, no matter how slow. I think you have been very wise to proceed cautiously.
I would do as you have decided to do as well Jan. The only other thought I had was Actemra that has now been licensed to treat GCA. I don't know a great deal about it but I have noticed good news about it filtering through. I wonder what we have to do to get prescribed it? Probably Methotrexate and fail with that first. Also trouble reducing Pred.
Your horrible symptoms are all side effects. I've had them in a much milder way on PMR doses. What happens when you reduce your dose using the dead slow nearly stop method? Do you get a return of GCA symptoms?
Well done for sticking to your guns in the face of such bullying. Keeping calm and carrying on. Let us know what happens.
Thank you for your reply and encouragement. Yes, when I try to reduce, I get the pain in the right temple again, not excruciating but still very noticeable. The rheumatologist is now obviously working on the principle that it's ok to reduce because my CRP levels are so low. As I say, I'll just carry on listening to my body!
Poor you I really hope you will soon be feeling a little better. Side effects of PMR and pred are not good I'm sure someone with more knowledge of this disease will be along with some advice for you. You are clearly not going to be able to reduce so quickly as his plan or maybe anyone else's demands as we are all different and PMR doesn't work to a plan. I saw my Rheumy yesterday who happily told me I was the wrong side af average as I should be on a much lower dose of pred and off altogether by the end of Feb as I will have been taking it for two years and the PMR should have gone by .then for most people. Hollow laughter from me, told him I was not most people. So now threatened pred sparing drugs and gave me a heap of stuff to read so that we can discuss it in March. There is nothing to discuss as I will continue with the Dead Slow Nearly Stop method which has worked for me dropping from 12.5 to 9mg after a major flare following his plan! It's not a competition to get off pred we need whatever we need.
Maybe you can help your skin by using an unperfumed wash instead of soap and lots of moisturiser and lots of TLC.
Do let us know how you get on hope you will be able to get an appointment with the other doc who appears to be much more sensible.
Thank you for your good wishes. And yes, I'm very careful with my skin because I have a very fair skin and already use skin products which are prescribed by the doctor. As for the TLC, that's a hard one because I live on my own and just have to get on with doing whatever needs to be done!!
Do wish the experts would shout louder so that all the deaf docs could hear but as my grandmother would say "there's non so deaf as those who won't hear " . Have had lots of help from this forum in fighting my corner don't know what would have happened had I not found you. Thanks to all those who have shared their knowledge.
I too had the breathing problems, doctor order an echo and a pulmonary function test that check out ok. I had issues of being so dizzy n close to passing out. But than that seem to pass. Now it’s the lower legs. It does seem to take over the whole body and it is a vascular disease. My advice is to taper real slow , as I’ve learned on this cite. I was previously on 40 mg prednisone dropped down to 4mg and than it started again being very painful with all the side affects. So doc put me on 20mg and I’m doing the 5 week plan of tapering very slowly and am doing better. Try to stay stress free as much as possible , it does help. This page has been a life saver for me. So much information and just to know I’m not nutty!
Yes I totally agree - I would be absolutely lost without this site. It really helps to know that I'm not the only one with this horrible condition.
Hi Jan
So sorry it's really difficult at the moment. Even on 15mg I had breathing problems. Fortunately only had one red spot thing. Perhaps if they let you treat the symptoms once any things like breathing issues investigated. At the moment it seems like you are just being "bullied" from every direction. Brick walls can be dismantled. I tend to just do what my body seems to need to manage PMR...not sure I would be quite so confident with GCA. The stress of all this will be making you feel worse so slowly slowly catchee monkey. The Dr, rheumy and rheumy nurse don't have to live with the symptoms.
I am on steroid sparing agent and slowly reducing steroids. The first few weeks on it were rough with nausea etc but, apart from a chest infection, have felt better.
I just hope you start to feel better and drs start to treat you effectively. 🌻
Sorry, you’re in the wilderness a bit, though it seems to be a crowded place in this area! Just wondering how long does it take to get those GCA symptoms back and what are those symptoms? How long do you leave it before jumping back up? Lastly, have you tried 0.5mg drops?
Symptoms start again within 2 o 3 days, mainly pain in the right temple, not severe but enough to be noticeable. Haven't yet tried a 0.5 drop, just 1 or 2 weekly. I shall continue to listen to my body and risk the wrath of the rheumatologist when I see her 😉
How long do you leave it with these symptoms before deciding to go up again? I’m just asking because I get withdrawal symptoms about day 1-4 (average day 3) that include a funny tmj pain that I used to think was as flair. It was awfully like my GCA pain but I can’t remember exactly why I decided to brave it and wait a few more days. It always goes. The few times when GCA was having a real go it came a a week or two later. Anyway, you know your body.
I only leave it a couple more days because the GCA has already caused double vision and the double vision is now corrected by prisms in my lenses. This also means that I have to wear glasses all the time now, even though both eyes had cataract surgery a couple of years ago,which gave me almost perfect vision. So as you can imagine, I don't want to risk any more damage to my eyes!!
Oh Jan how I sympathise as I am only just down to 29.5 after 5 months on 30mg. Tried to reduce to 29mg over 5 weeks but in week 3 started to feel very poorly so staying at 29.9 for a bit longer. Also on Methotrexate 15mg. Was put up to 17.5mg and made me feel very sick. Don't let them bully you into reducing too quickly. Exactly what happened to me. I go with how I feel and have learned the difference between a flare and withdrawal symptons. I also have the same side effects but no breathing probs. Battle on. Diagnosed Nov 2016 PMR/GCA. Startedon 40mg told should have been 60mg.
Like so many on this forum, I had no idea how much havoc this illness would cause in my life - not helped by the medical profession not listening to us😡
Hello, so sorry to read about your struggle. PMR and GCA are challenges enough to battle without having to challenge the medical profession. If it helps to know, I too have had the occasional battle with Doctors on my journey with PMR and GCA. I cannot tolerate steroid sparing agents and have tried so very hard to reduce to 10mg on many occasions but the lowest I can maintain on is 11mg, I have managed to achieve this by dividing the dose 6mg in the morning and 5mg at night. My Rheumatologist approved this and for now it works. When I have a flare up I am prescribed 60mg but then reduce as soon as possible, as you know the side effects are horrendous but without this medication I doubt very much I would be able to see or even be here. When you feel a little better maybe you need to consider changing your GP or Rheumatologist, to one who is more understanding of your needs managing your PMR and GCA, and the complexities associated with long term steroid use, there are some excellent ones available.
Currently, the availability of doctors at my medical practice is very restricted - 3 permanent doctors and the rest, locums. It's just luck if you get to see the same doctor twice!!
Just a couple of thoughts about skin problems: I use Doublebase Gel to moisturise, and arnica cream to help fade the red marks. Also, keep an eye on slow-healing grazes and cuts, I've had a couple of infections on my lower leg that required antibiotics to clear - and lots of visits for dressings. I noticed they used antibacterial waterproof dressing with Silver which have proved effective at protection and speeding up healing.
I think there's a mini-revolution taking place with us 'forumites' .. as if the stress of the disease isn't enough we have to deal with conflicting advice and telling-offs from doctors and rheumies if we're not on 'the plan' whereas the hard-won knowledge here from fellow sufferers gives us the confidence to take control of our own unique requirements. Obviously we still need ongoing lab work and worrying symptoms should be checked out, but pred dose should be within our control, without the stress of conforming to a hypothetical patient who gets better within the fabled 2 year time zone. Good luck, and take it slowly!
You have the battle that I have experienced for years. the stress of it makes you worse......do it your way, listen to your body and lower accordingly....Good luck.....
You are not alone all of us can sympathise with what is happening in your life, feel free to have a good moan on here if it helps we do understand. We too have battled medical book docs who think we should all conform to their idea of the ideal patient, I was once able to say I told you so to a consultant dermatologist and boy did that feel good!
Do your docs not realise that bullying is not acceptable?
Do you have a meet up group you could join, it does help to chat with others who have many of the same problems as yourself.
I would very much like to be able to join a group but the nearest one to me is in Bath which means a train journey with a walk to the venue once I get there. Hopefully I'll feel well enough soon to be able to try this.
Personally I think expecting someone with GCA to get from 40mg to 15mg in 6 months is daft. Even most of the tapers in the literature say 1 month each at 40, 30 and 20 AND point out that the taper MAY need to be tailored to the individual patient. Which they apparently don't read...
However - the things you describe are very common with pred and the only ones that probably really need keeping an eye on is the breathlessness (which could be associated with the rapid heart rate) and the dizziness/vertigo, whatever you want to call it. That could be a symptom of the GCA though can probably also be due to pred.
I got really breathless a month or so ago. So bad I got an appointment that same day to see the doctor, (I do have Asthma, but this just felt different) The first thing he did was take my oxygen levels which were really low, he upped my steroids from the 15mg I was on to 40mg for 10days, then to drop again to the 15mg. It worked, the breathing improved greatly.
However I Do still get very breathless doing very little, (much more so than with just the asthma breathlessness) & when doing any activities at all I now know to sit & rest as soon as my breathing starts to Labour, it doesn’t seem to matter anymore that I use steroids with inhalers for my asthma. I just get breathless very easy. There was a time a dose of steroids for out of control asthma worked wonders.
So I blame everything on this condition now. It has certainly changed me & my life.
Oh how I agree!! Until my initial diagnosis in April, I was very well - gradually recovering from the loss of my husband last year and starting to build a life again. It's all changed now 😟
I would recommend that you ask your doctor about Actemra...principally because of your adverse reaction to the prednisone. I have also read (somewhere?) that the early you do the biological treatment (Actemra), the better. Can’t fool around with GCA.
Unfortunately my local doctor has decided not to get involved with my treatment and I can't see the rheumatologist again until mid-February. Thanks though for your advice and I'll ask her when I go to that appointment. .
Are you in the UK? It sounds as if you are. Where are you? Maybe we can suggest someone who would not view GCA with such a blinkered outlook. If you have symptoms you should NOT be reducing further.
The locum you say you saw was totally wrong - and I hope to goodness at some point she learns about GCA and pred. She could have said that to someone who was then scared into stopping pred - dangerous to do suddenly for anyone but putting a GCA patient at risk of losing their sight.
Pred is a very powerful drug - but it saves lives and vision for a lot of people. It isn't used willy nilly by any doctor and I would make a complaint about her and her attitude.
I live in North Wiltshire, between Swindon and Cirencester. The locum told me "I've dealt with many cases of GCA so I know you definitely need to reduce", then went on to say she didn't want to get any more involved in my treatment!! It was at this point that I contacted the support nurse at the rheumatology department who subsequently spoke to the rheumatologist who decided I should reduce from 30mg to 25mg then have another blood test. But, I shall continue to listen to my body and reduce if I think it's safe. Incidentally, I got the results today of my most recent blood test and my CRP level is 4 - which I think is the reason she feels it safe for me to reduce. But again, I shall only reduce if or when I think it's ok.
I'd go so far as to say she's lying - unless she was a trained rheumy in the first place. Which frankly - I doubt. And if she were she'd know better. Most GPs might meet one or two cases of GCA in a lifetime, it is a rare disease. That's half the trouble, they don't see it.
I'm not impressed by your rheumy either - I'd rather have closer contact. And symptoms ALWAYS trump blood tests. They sometimes don't rise again in a patient who is on pred and if they do they often lag a long way behind.
Thank you so much for your reply. I totally agree with what you're saying about the locum - I didn't believe her either!! And in the meantime I can promise you that I definitely won't do anything which could jeopardise either my eyesight or my health.
Hehe - just seen the Doc Martin programme that includes GCA. HE told the patient she'd be on pred AT LEAST 2 years and needed WEEKLY checks! In your dreams!
Just watched the Doc Martin programme - hysterical doesn't even come close to it!! And when he casually did the biopsy in his surgery, I really realised that I must have been living on another planet recently 😀
So much extra difficulty when the gps/hospital advice opinions conflict and at your discomfort, worry and loss of positive support in understanding YOU! So sorry. I am new and ask - what does GCA stand for?
It is the same thing. Temporal arteritis is the older name, suggesting it only affects the temporal artery which is far from the truth. But when it was first described they didn't know it spread further and the use of the temporal artery biopsy seems to suggest to a lot of people that that is the only place it would be found. In fact it is used simply because it is easy to get at and isn't essential, you can do without it.
So sorry. You are the loser when the medics disagree and mess you about and confuse you. You need support and encouragement instead of their divisive( not intentional I'm sure, just professional arrogance that insists their opinion is the right one) attitude and decisions. I am new. What is GCA? L.
Giant Cell Arteritis can either appear as a separate illness or can sometimes develop after PMA has been diagnosed, which it did in my case. In very simple terms - and I hope I've got this right because I'm still learning about it myself! - the rogue cells which are created because of the auto-immune illness become very enlarged in the blood vessels from the shoulders/neck area upwards, in my case in the arteries in the right temple. The biggest danger by far is loss of sight, and this can happen VERY quickly so any vision disturbances need to be investigated and treated as an emergency. As I've said earlier, I can only tell what I think is right but I'm sure one of the "experts" will be along to give you more detailed information.
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