Temporal Arteritis

[Phed]

I was diagnosed with Temporal Arteritis on 23rd August 2019 which was a shock as I had never heard of it before, I have been on Prednisolone since being diagnosed, since starting the Steroids I seem to be having trouble sleeping at night and also suffering from a few bruises which don’t hurt but look rather unsightly, the bruises don’t seem to be going has anyone else had this problem and how long before they eventually disappeared.

[piglette]

I normally look like I have been in a pub brawl. The bruises do go eventually but in my case are replaced by new ones!

[Phed in reply to piglette]

Thank you for your reply, I was surprised at the size of the bruises, from what you say it looks as it my bruises are only just starting as none of them have disappeared yet good job winter is coming at least they will be covered up.

[piglette in reply to Phed]

I was walking by the swimming pool this week and noticed my legs in a mirror, I could not believe it!!

[Kpont1]

It takes time but the steroid makes your skin thin so you bruise more easily and it takes longer to heal. It also can keep you awake. It’s a good rug one way but isn’t in other ways

[Phed in reply to Kpont1]

I must say the drug has helped , but not impressed with the bruises as one is rather big. I seem to get a couple of hours sleep and then wake up early hours of the morning fully of energy.

[CT-5012]

Welcome to the club that none of us wanted to join! Yes me too with the bruises and the thin skin also bleed easily with the slightest tiny knock on them and have found the kiddie Elastoplast doesn’t cause further damage when removing them.

You should have a dexa scan before taking any medication to improve bone density as you may not need it, most of us are fine taking Adcal which is calcium and vit D and K2 and a calcium rich diet.

You have found the best place to get your questions answered or a bit of sympathy if you need it, the wise “aunties” will be here in the morning! not all of us suffer from insomnia 😴 all good wishes.

[fmkkm]

Hello and welcome!

I was diagnosed with GCA or temporal arteritis in January, 2016 and started on 40 mg prednisone. I am now down to 4 mg . Yes to the bruising and the insomnia. It is a common complaint on this forum. Please read all the information you can on this site and check in daily. Without Healthunlocked PMR/GCA I would have been lost. Stay close and let us know how you get on.

Best, fm

[PMRpro Ambassador in reply to fmkkm]

I see predictive text nabbed your post - arthritis not arteritis!!

[fmkkm in reply to PMRpro]

Thank you👍

[CT-5012 in reply to PMRpro]

And her site😩

[fmkkm in reply to CT-5012]

Ok then, no more posts on Friday night after a few drinks with friends 😂💕

[Hidden in reply to fmkkm]

It's the post Z pill that I have to be careful with....

[Phed in reply to fmkkm]

I can’t help but think how lucky I have been in having my Temporal Arthritis diagnosed, the first symptoms started about 6 weeks before I was actually diagnosed with the condition, the Doctors seem to miss the point that the headaches were so painful you couldn’t even brush your hair or put head on a pillow, I started on 40mg daily and will be cutting down to 30mg in the next few days, once a week I also have to take a Alendronic Acid Tablet (70mg), the Steroids have helped no end but the sleep is annoying as once a wake usually early hours of the morning I just want to get up which then makes it a long day, now you are down to 4mg daily does that mean you are virtually pain free now? For a problem that can damage your sight I was amazed at how little Doctors know about it, I must have seen 6 different Doctors before it was diagnoses and it was the last and youngest doctor that knew straight away what it was and started treatment and hospital appointment straight away.

[Phed in reply to Phed]

Sorry I started on 60mg Prednisolone and cut down to 40 about 2 weeks ago with the view to gradually cutting down even more as time goes on.

[Dream21]

I was diagnosed in 2016... 60mg to 40mg...30mg. Since I was on Rayos (Steroid) for a year and could not taper below 30mg, I started Actemra Shots and now down to 2 mg and currently tapering to 1 mg.

The steroids made me very anxious and my body would be literally shaking. I could not sleep at night either. I was prescribed something for anxiety and sleep.

This condition is not well known, so the symptoms and side effects seem scary. Please know that you are not alone and that you adapt to this new normal eventually. It can be a roller coaster of ups and downs and grieving for a loss of health. There is a time you will adjust to your new normal. We are here when you need support.

[Phed in reply to Dream21]

Thank you

[SnazzyD]

Hello, sleep often eludes those on Pred. I survived the higher doses by taking naps. Bruises, yes. Do ask for a DEXA scan to see if you really need those bone meds. They can be very useful but do come with their problems and many docs seem to like to prescribe them on a just in case basis when they are not necessary. If nothing else, the DEXA scan will tell you if any bone thinning came before or due to Pred which could be very important in the future.

[DorsetLady PMRGCAuk volunteer]

Hi,

Yes, yes and yes. As you reduce Pred, your sleep should improve- but at high doses you will suffer from sleeplessness; your skin will also improve, but it takes longer so protect it as much as you can with moisturising lotion, and keeping forearms (in particular) covered.

Also have a look at this -

healthunlocked.com/pmrgcauk...

[Kathymilner]

I have been on steroids for two years, started at 15 now down to four so hoping to get off them by the end of the year. If you just catch your arms on a door handle you will have a bruise that takes ages to go, it’s so easy to get a bruise when you are on steroids you just have to be really careful.

[Phed in reply to Kathymilner]

I started on 60mg a day and the Consultant seem to think it would take me a year to come of them gradually by cutting the dose down, out of interest do you carry a blue card because you are on Steroids? Only I read somewhere that you are supposed to. As you start to cut down on the Steroids do the symptoms go completely? I don’t get the headaches like I used to and I can now brush my hair which is a huge bonus but just wondered if it will ever go completely?

[Hidden in reply to Phed]

Yes phed it will go. But most take longer than a year. The drs just try and make you go down in the year. I will keep my fingers crossed you are a lucky one.🤞🌻

[Phed in reply to Hidden]

Thank you

[Hidden in reply to Phed]

Yup...the blue card is recommended if you are on steroid for more than 3 weeks as the adrenal response is somewhat altered for patients. Hence the need to taper slowly rather than stop altogether which can be dangerous.

The card is to alert medical personnel of the treatment. Please do mention you are on steroid treatment prior to any dental treatment also.

[Kathymilner in reply to Kathymilner]

Hi Phed, as you can see my previous reply was 11 months ago since then I have been back up 60 mg as the pain came back big time. After getting down to 40 mg I started to ache again when I got down to 20mg it was worse so the GP advised to go back up to 50mg but that didn’t take the pain away so had to go up to60mg agin, this was my 3rd time over the 2 1/2 years so that’s why I was told to take slower reducing 1 mg every 6 weeks. Before I drop a mg I do 7. 6. Every other day for a week then go to the lower dose. So I am now down to 6mg and at the moment it is working so I am hoping by doing this I will get off them around Christmas time.

I am also Diabetic type one and the steroid played havoc with my Insulin I finished up on almost double dose. Also underactive Thyroid so now have 3 autoimmune diseases. It’s very hard to balance everything sometimes. I still go on holiday abroad Australia, Spain etc. So make the most of everything.

Best Wishes Kathy xx

[Phed in reply to Kathymilner]

Like you I also have an under active thyroid. I have been on Steroids for nearly a whole year now (diagnosed with GCA 23rd August 2019) I have managed to get down to 7.5mg but have had to increase the dosage on the odd occasion, I reduce the dosage (consult’s advice) by 0.5mg a month, I have worked out if all goes to plan (fingers crossed) September next year I could be steroid free, I have been trying to do a low carb diet which was recommended on here is helping to lose a bit of weight but slowly which is better than nothing I guess, I did have my blood test done the other day and my inflammatory markers have gone up very slightly so I will be having another one in a couple of weeks when hopefully they won’t have gone up any more, I now have a cataract forming which can be brought on by steroids so something else to look forward to an removed at some stage, like you I do make the most of everything it was shock horror to discover I had GCA as nobody had really heard of it once over the initial shock I thought I have to live with it so do everything you can while you can. You really sound like you are enjoying your travels which is brilliant as it’s so easy to just give up, I found in the early days of my diagnosis that it was easy to feel sorry for yourself but going away really helps as it’s always lovely to have something to look forward to. Happy travelling.

Best wishes

Pauline xx

[PMRpro Ambassador]

Welcome - what sort of dose are you on? GCA in the form affecting the head, also called temporal arteritis, usually requires a high dose and like most things the side effects are worse at high doses. However, the bruising does tend to be a factor for a long time once it starts and so does delicate skin. I bruise but it is mainly due to the anticoagulant therapy I am also on (but that's another story) but I do notice that once I have a bruise, that is where I will bruise again. If there are specific things that lead to the bruises - housework, gardening and so on, it is possible to get protective items to reduce the effect.

The sleeplessness also depends on the person - pred at any dose I've been on hasn't been a problem but I have never been above 20mg. Others find sleep elusive. You need to get used to grabbing a rest when you can and learn to relax and accept that lying comfortably may not be as good as sleep but it helps. If it is too bad you could try OTC sleep aids - but do ask the pharmacist for advice to be sure they are OK with the medications you are taking. If that doesn;t help then speak to your doctor.

We should be taking calcium supplements when on pred and many find they need magnesium to prevent muscle cramps. If you do, then taking one or other with a milky drink or a yoghurt before bed works to encourage sleep for some. Google "sleep hygiene" and make sure you try to apply all the tips - dark bedroom, quiet and the right temperature, a routine before going to bed that preferably doesn't involve watching/reading exciting content, all sorts of things can make a difference.

[Phed in reply to PMRpro]

Thank you for welcoming me to the group, I’m on 60mg of Prednisolone and will be cutting down gradually every 3 weeks, I go back to the consultant in October so he can check how things are going., I also take Alendronic Acid 70mg once a week, I’m amazed so many Doctors didn’t spot the symptoms when I originally said about the headaches and tender scalp in July especially when the headaches were there day and night, the bruises are terrible so angry looking at least they will be covered up in the winter so won’t notice them, I was amazed how difficult it was to get it diagnosed, because of the bruises I have been sent to a Haematologist who has done lots of Blood Test’s but isn’t convinced it’s Temporal Arthritis he thinks it’s a virus despite being diagnosed by the Consultant in the subject and the Steroids helping improve the 24/7 Headaches no end.

[PMRpro Ambassador in reply to Phed]

He wasn't meant to look for GCA - he was suppose to rule out blood disorders!!!! I know - you really do wonder sometimes. Even paramedics are taught to recognise possible GCA in Yorkshire!

[Phed in reply to PMRpro]

I totally agree with you, had lots of blood taken on Wednesday only to receive a letter yesterday to say he forgot to give me the paperwork for the virus’s so could I come back to hospital for that test, it’s a shock when you are told that you have GCA and then you see the haematologist who decides you haven’t got it and you don’t need to be on Steroids, luckily I saw the Consultant the week before who diagnosed GCA and felt so much more confident in his diagnosis, I’m not even sure the haematologist even knows you can’t just stop Steroids just like that he was a stand in Doctor from our local hospital and apparently came from Kings College Hospital London which I always understood to be a good Hospital but now have my doubts, gosh you really are lucky if your paramedics are taught to look for possible signs of GCA,

[PMRpro Ambassador in reply to Phed]

Not mine, I live in Italy. At least ours usually take you to hospital if in doubt! But Daughter No 2 is/was a paramedic in Yorkshire ...

[Sho-Sho]

Ironically I was diagnosed with GCA 3 years ago on August 23rd (my Birhday!) - not the greatest birthday present. Steroids are vital in reducing the inflammation but bring their own problems as you are finding. Bruising of the skin is typical as steroids thin it & also a Dermatologist explained to me yesterday it reduces the collagen so there is very little protection to the blood vessels, he suggested wearing specially fitted support stockings would be very beneficial (Boots provide this).

Sleep also classic problem - steroids wire you up - I have to admit I was prescribed sleeping tablets to help me get through the initial high dose time as my consultant felt it was more important for me to get sleep in helping cope with the illness.

Do ask for as much advice as you want from this forum I have found it invaluable in helping me understand and cope with this condition, my GP was lovely but knew virtually nothing about how to manage it.

Good luck.

[Phed in reply to Sho-Sho]

Poor you being diagnosed on your Birthday, it’s bad enough finally finding out what you have but on your birthday 😔 are you still taking Steroids or is there a chance you get to come off them? I don’t go back to the Consultant till end of October when once the shock has worn off to what it is I will remember to ask all the questions I need answers too. Like you our Doctor seemed to know very little about the condition, I ended up seeing 7 Doctors in 3 weeks at our Surgery as the headaches were so bad but for some reason they seemed to dismiss the headaches and always came up with an infection of some kind, funnily enough the Doctor who knew straight away what it was must have been the youngest one I saw and couldn’t have been more helpful, I just felt so relieved that someone could put a name to what was causing such pain, but then of course the shock kicked in as to how serious it could have been.

[Sho-Sho in reply to Phed]

I am still on steroids,now at 7.0mg - in answer to your question regarding coming off steroids, everyone is so different but hopefully yes. It seems the minimum time is a year but that is unusual, 2 years pos average, and for some longer, it all depends on how severe the inflammation is and when it decides to burn itself out.

All the steroids do is control it not cure it, eventually it will go away.. read up as much as you can about GCA which makes it easier to uunderstand what is going on, lots of info from this website , and be prepared to feel very fatigued so try and give yourself the time to rest, don't fight it.

[Hidden]

Hi phed, invest in some double base gel. You can get it on prescription but I just got it online via a delivery to a chemist, but the Dr or pharmacy can probably get it in for you It wasn't expensive and really helps the thin skin and isn't claggy. Once rubbed in you can't feel it and has lasted months so far using it on chest arms and legs.

[Phed]

Thank you I will give it a go.

[Sally001]

Hi Phed, I too have Temporal Arteritis, and I hadn't heard of that before I was diagnosed either. One of the side effects of prednisone is insomnia and discolouration that looks like bruising, which will go away in a few days.

I've been on prednisone for 8 years and would love to be off of it. Prednisone will also give you a moon face, triple chins, bags under your eyes, weight gain and a bloated stomach. It is a horrible but great drug at the same time. I am sorry to be the bearer of bad news; just be aware that you will always be hungry and try to stay away from carbs if you can. It is easier said than done I'm afraid.

I wish you well.

[PMRpro Ambassador in reply to Sally001]

Not WILL give you, CAN give you. I've been on pred for over 10 years, lots of it at 10mg and above. I HAVE had some of those problems you mention - but all are dealt with now I know how.

[Phed in reply to PMRpro]

Thank you for your message, it’s very reassuring to hear it CAN rather then WILL make you have the above problems especially when just starting out on Prednisolone. I really appreciate your comment and will certainly be trying to work out what is best for me to eat.

[Hidden in reply to Phed]

Have a look at this for ideas about low carbs. I haven't been on high dose but at above 10mg for 2years and on several drugs that cause weight gain. I have actually lost over 2st, almost 3 low carbing without even thinking about it.

dietdoctor.com/low-carb

[Sally001 in reply to PMRpro]

I was on 90 mg to start, and that is why it DID cause me to have these problems. I guess it depends on the dosage??

[PMRpro Ambassador in reply to Sally001]

It does. But we have GCA people who also started on high doses, not as high as you though, who cut carbs right from the start and managed to reduce those effects. And others who got rid of those effects once they knew how.

[Sally001 in reply to PMRpro]

That is encouraging to hear; maybe there is hope that I can finally look halfway normal again. Thanks.

[PMRpro Ambassador in reply to Sally001]

You can - but it won't necessarily happen on its own and you can help it along but it does take some discipline.

[DorsetLady PMRGCAuk volunteer]

Hi again,

Now you’ve had a bit of time to read replies and come to terms with your GCA thought you might like to read this post I wrote after I came off the Pred -

healthunlocked.com/pmrgcauk...

[Kathymilner]

I have been on Steroids for almost three years for Polymalgia Rumatica , I have put on a stone and half in weight without overeating and my forearms are terrible with bruises and snags on the skin which scar, they look a real mess. I am trying very hard to get of them and this time have got down from 12 to 6 March. When I reduce I have been told to go down 1mg every six weeks weeks so it’s a slow but sure method. Hopefully. Best wishes x Kathy