Temporal Arteritis and PMR

Hi all, like most with this problem I am early sixties, but also developed Temporal Arteritis. Although I came away with leaflets, the side effects of 50 mg of Pred has been significant. The mania, I'm jumping from one thing to another, lack of concentration, I can only sleep about 3-4 hours in 24 hours, breathlessness, weight creeping up; the GP has suggested that I am overly sensitive to Pred and that as I reduce it will improve, they are hoping to get it down to 10mg by end March 16 then maintenance for 2 years, has anyone any advice for coping with these problems. I have also read in a paper from America that it can go in a five year cycle, i.e. A couple of years after coming off the Pred (if I come off) it can all start again! Does anyone know if this is correct? Also, does anyone know about any screening for Aortic Aneurism, as I have also read there is a significant increase in risk for females, and females , under screening guidelines are not routinely screened in this country!

15 Replies

  • Hi Lillegirl,

    I can certainly relate to the mania! I started on 80mg, reducing to 60 after two weeks. Despite waking up at about 2.30 am every morning, I was like the Duracell rabbit in the advert all days. So full of energy I thought I could rule the word, and talk! I could talk for England. Lack of concentration, or brain fog as we sufferers call it is quite usual. As you reduce these side effects do wear off, but with the agreement of the GP I took an OTC remedy to help me sleep - about every fourth or fifth night, enough to break the cycle, but not become reliant on.

    The weight will come off again as you reduce dosage, but you need to be a bit more aware of what you eat, try cutting down on carbs and increasing fruit and veg. You need to ensure you have enough calcium in your diet, because Pred can increase your possibility of osteoporosis. Try and do some gentle exercise if you can, not too much. I've discovered that after five years (1.5 undiagnosed and unable to do any exercise and 3.5 on Pred) my muscles are really weak compared to pre GCA so I've just started to do something about that. Much better to avoid that scenario if possible.

    It's a long term game, I've just got down to 3.5mg after 3.5 years, so that gives you some idea. I think your GP may be over optimistic in his plan for you to be down to 10mg by March next year, and I wouldn't say you are particularly sensitive to Pred, your reactions are par for the course!

    The main thing really is to learn to pace yourself, plan things a bit more, and take care of yourself as much as you can. You need to explain to your friends and family what you are going through, and how you feel. They will find it difficult to understand because Pred usually makes you look good, apart from the increase in weight, so to all you look fine.

    Don't know anything about screening for AA, but you could talk to your doctor about it if you worried.

    Take care.

  • Lille, DL has already given you lots of helpful advice - I just wanted to pop in and say that screening for Aortic Aneurism should be carried out every 1-2 years for all patients diagnosed with GCA, and should be continued even after coming off steroids.

  • Hi Celtic, is that a should be, or is it routinely done in UK?

  • Lillegirl, it should be done routinely everywhere. I didn't become aware of it until nearing the end of my journey with PMR/GCA/steroids when at an appointment with my rheumy on another matter, he mentioned it, although had never done so during my few years under him. I have since had one X-ray and am due another next year.

  • "Overly sensitive" my foot! Most people would react similarly to that sort of dose!

    There is no desperate hurry for the screening but you can ask to be added to the abdominal screening programme as a "person at risk" - ask your GP or contact the screening people. Not sure how they deal with the ongoing risk with GCA which remains for up to 10 years post stopping pred but maybe you can be seen every few years. The other risk in GCA patients is aneurysm in the thoracic aorta, hidden behind your ribs so less easy to see. To visualise that you need an echocardiogram - also using ultasound but with more specialised u/s equipment. Discuss both with your GP or your rheumy.

    If any dilatation or a small aneurysm is found it should be followed up at intervals to see how fast it is growing. As I say, in the case of GCA the risk remains beyond 65 unlike the case for men so you will require screening again. Doctors are often blissfully ignorant of the need and it has been suggested it wasn't done as there is nothing you can do about it - which is utter twaddle. That may have been the case 10 years ago but medicine (and surgery) moves on and they have things called stents! I met a lady of over 80 from Greenwich on holiday here in my village in Italy just a few weeks ago - about 2 years ago she was taken ill in their caravan and rushed into our local hospital who immediately identified a thoracic aneurysm. She travelled home to London and was operated on successfully at St Thomas's I think her husband said. Physically she's now fine apart from arthritis although is is developing dementia (already there pre-op).

  • So many thanks for this info, it is hard to gather it all together and comprehend the implications! The consultant indicated that I am to be looked after by my GP, but when I approached her with list of questions i.e. Aortic Anurism she had no knowledge so felt a bit deflated when I left as she said most of my questions are for the consultant! That is why I have joined the forum, for active ongoing info, as I am a self helper and have never rearly taken any drugs before having relied on homeopathic for most things, however, when this reared its ugly head, my homeopathic nurse advised to go with the flow of steroids because of the speed I needed to get the medication into my body. Must admit, it frightened me as I have always been a fairly fit person (not fanatical, just careful).

  • HI Lilliegirl

    I was diagnosed in June this year (56 years), with PMR and GCA, and was told I was 'sensitive' to the steroids - trembles, palpitations, sweats insomnia ..... the list continues - so the consultant dropped be quite quickly, down from 40 mgs to 17.5 in the space of 3-4 months - the symptoms returned, now back up to 25mg, doctor suggested I go back up to 30 but must say I am reluctant. I do work full time, but have just taken 2 weeks off sick to try and stabilise things. Although I cant sleep - I am exhausted. I have an antihistamine call aterax (hydroxyzine) that helps me sleep, I take it when I definitely need some sleep, it doesn't knock me out but really helps and it is not addictive apparently.

    My mood swings are problematic, I have always been extremely active, focused and determined and thought I would just get through this condition with that attitude, unfortunately, I have not, which leaves me feeling pretty down.

    This forum is great, I like you, seem to get told to ask my GP who then bounces me back to my consultant who doesn't really seem interested in talking to me about the condition. His explanation to me was " you will have 3 crap years, the first being really crap, the second being pretty crap and the third not quite as crap", honestly that was his description. I am also not pain free, I still get headaches and temple pain, the consultant does not appear to worry the GP does?? So once again not sure what to do.

    My struggle is juggling work at the moment. The consultant and doctors say don't make any life changing decisions on how you feel now, but managing work is incredibly difficult .... so If this is to continue for several years, I will have to.

    I hope you are feeling a little better on the steroids, they certainly help the pain but the side effects can be really difficult to live with.

    AA has not been mentioned to me - so will be interested to hear what the others say on this forum.

    I wish you well.

  • Well at least he was more realistic than many who will tell you you will feel perfectly back to normal once you are on pred!

    What do you do (not necessarily exact details) - do you have sick leave entitlement? Are you in a union and dose the employer have an Occupational Health doctor on tap? GCA is covered by disability law so you have some rights to adjustments to working practices. (I'm told PMR is supposed to be too but whether that really works is another question: "PMR is well managed with pred..." Yeah, right!)

    You will recover far better and get your life more normal if you are able to rest while your body starts to heal itself. Even if it is just a few weeks it will help - obviously longer would be better or part time or something longer term.

    There are a couple of people with GCA on the forum who have continued to work with GCA. I know one lady who is now back at work full time - but now does not have to work more than 2 night shifts in row for life and the Occy Health doctor said it would "Medically negligent to allow you to do more than that post GCA" She was terrified to talk to her employer, Occy Health and the union at first but we persuaded her to do so - with the result she had a considerable time of work, graded return to work and more suitable work until she was able to go back to the very strenuous outdoor work she normally did. She was off pred in barely 2 years - after a REALLY ropey start which improved dramatically once the employer was on-side.

  • Thank you so much that is really interesting. No, just statutory sick pay, may only be able to afford 2 weeks off. However, I think my employers are getting me an appointment with occy health, but in principle have agreed me going back to reduced hours. Not sure how to juggle them yet? That is really interesting I did not realise that GCA was a disability, so if you have 'recovered' and are eventually off pred, is it still a disability you have? My employers were good on the one hand saying I could work from home, or reduce hours, but have been unable/unwilling to put any actual support in to assist with the workload, and it is a full- time ++ job. They will have to look at this on my return though, because so far, 4 months in and I am no better really - although less pain, I seem less able to function - strange and extremely frustrating! My brain is often away on holiday!

    Thank you so much for you response to my post.

  • You not only have the brain fog of the underlying autoimmune disorder to cope with - and that is bad enough - but pred does it too, worse for some people than others.

    So do I gather that your employers were perfectly happy for you to work shorter hours which would cost them less but you would still have to do the same amount of work? Which is what all the people I know who work part time say...

    I worked from home anyway as a freelancer - and that made a massive difference not having to get up and dressed and get to work at any particular time. I could rest or do anything else when I wanted/needed.

  • Hi Lesley2015

    Like you I probably have everything you have mentioned, but.i don't get tired, I go to bed around 10-11 pm and sleep until 2-3 am then my eyes ping open and I then stay awake and active until 10-11 that night. I am area for my 92 year old mother who has Altzheimers so alway plenty to keep me occupied, just worry what it is doing to my body!! I don't know if you read the reply fromPMRpro Volunteer regarding Aortic Anurism and Thoratic Anurism, two things to look into!!

  • Hi lilliegirl,

    I was just the same and spent all night doing emails, but would get symptoms back during the day. Now take the Atarax, but that leaves me dopey- so no happy solution really.

    Yes will definitely look into both of those nasty sounding conditions!

    Take care

  • Follow this link and then read and download the BSR Guidelines on the Diagnosis and Treatment of GCA. pmr-gca-northeast.org.uk/as...

    I had GCA for 5 years and have now been in remission for 4 year and counting.

    Knowledge is Power and knowledge is what you need.

  • Hi Lilligirl

    I've just recently had my 57th birthday and have just been diagnosed 3 weeks ago with GCA following on from PMR and taking 40 mg Pred waiting for my biopsy next Friday. Like you I'm just full of energy, wide awake until 4am every night and up again between 6-7am, that's been my routine for the last few weeks. I'm still in the process of loosing weight may be due to the pain I had and not being able to jump up to the fridge/kitchen as much 😀. Try and reduce carbs, increase fruit, veg and low fat protein, also as suggested aim to increase your exercise even if you try a wee walk each day and build up from there. I've just found this site tonight or this morning while I can't sleep, loving the updates, support and interaction from everyone, I no longer feel alone with this condition that before now, myself, my family and friends new nothing about.

    It would be interesting to find out if anything triggers the condition, for example I had 2 weeks with heavy gardening duties, lifting bags of sand, cement, pebbles, top soil etc and a week later was hit with PMR but just thought I had over done it??? Can anyone else think of any possible coincidental factors?

  • Hi suex2015, I don't know if anything actually triggers it, I was widowed early 2014, after a very short illness (cancer) which was a shock, but when I think back over last couple of years I had had quite a lot of stress in my life with work, family, and had been going back and forth to GP with mainly what was treated as artheritical problems, but since I can now relate them to the PMA, so if they were misdiagnosed it left time for the GCA to develope! Generally speaking I am a laid back, hard working committed individual and I put my all into everything I do. I look after my mother with Altzheimers, I nursed my husband at home, which was hard as he lost the ability to understand what was going on, the cancer had effected his brain, luckily, or unluckily, I will never know which it was, diagnosis to end was a matter of a couple of months, but I don't think it ever gave me the time to think it through and adjust! So yes I suppose I have had a few triggers of stress and shock! I have changed my diet to whole food (although I have not gone totally organic) including smoothies when I don't really know what to have (mainly green smoothies) I walk most days, I have taken up yoga, I now have an appointment with a medicinal herbalist (next week), I am an avid gardener but find everything so frustrating because it all has to be done in stages! It's not that I get tired, it is just the duration of time that I can keep going although I do recover energy after about an hour. I have lost weight, but put body mass on around my midrif, and now also look like a Hampster! Was due to reduce my Pred again but GP has advised against as I have had too many recurring symptoms this month, so from August to now have reduced from 50 mg - 30 mg, waiting for my follow up appointment with Consultant early November and see what revelations he will come up with, although I must admit, I have more faith in this one particular GP than anyone! Have you read PMR&GCA a survival guide by Kate Gilbert, a few hints and tips come out of this for day to day management. This site is very good for info, I wish you luck on your journey through this quagmire!

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