Log in
PMRGCAuk
8,287 members14,175 posts

How long will this go on for

I was diagnoised with GCA May/June 2018 after being very ill for several months. I was put on high dose steroids etc. But I am still feeling very unwell. I cannot walk very far so need the help of a disability scooter. My legs give way after about 10 mins on them and I go into cold sweats. Life is very limited at the moment. Is this GCA or is there something else going on? Every morning for the past 3 months I have to deal with diahorea. I seem to pick up one infection after another and I bruise very easily. I feel trapped and cannot find a way out. Please advise

39 Replies
oldestnewest

Oh gosh, I do know what you are going through, I had the same problem when I was diagnosed with GCA in Jan 2017.

A ten minute walk would take me an hour, I was frightened of going out. I found buying trekker sticks helpful and would not leave home without them, I didn't fancy having crutches. Even walking around the house was difficult and I almost had to crawl up the stairs.

My doctor told me that I must keep walking to get the circulation going, with this disease you have to try to keep as active as the body will allow but it was not easy.

I had this problem for nearly a year, I can go out now without my trekkers.

You have a very serious disease and it takes time to get anywhere near normal again.

Sorry I can't be more positive, give yourself time and try to get about as much as possible but make sure you rest up as well.

I think that the problem was a combination of taking the high dose preds and the GCA.

3 likes
Reply

Thank you Primarose. I am trying so hard to keep life normal and it just is not working. It makes you feel a failure. Its been a stressful time too in that we have just finished having an extension built on our house. I was hoping I would get back to some sort of normality if I can remember how that feels. I really just hate where I am. At the moment we are on holiday in Cornwall and we have to think about scooter access as the roads are steep and bumpy and I don't want to get stuck in a scooter on the roads. There are a lot of reminders of what I cant do and that makes me sad. I used to love trawling through rock pools, walking around the shops all not really possible at the moment. Just hate this.

2 likes
Reply

Hu carin , I’m new to all this but keep talking to the forum they really do help , I know no one can take your pain but knowing we share it along with your sadness hopefully will pull you along .we my husband and I had to cancel ours because of procedure.so you enjoy your holiday an all that it has to offer , feel better soon x

2 likes
Reply

Hi Cairn, I don't think that you can lead a normal life at the moment, you are spot on it doesn't work. You are taking powerful drugs and they can have all sort of effects on you.

I found it really hard to come to terms with the GCA and like you hated it. Hated not being able to do normal everyday things, hated not to be able to go shopping.

It will get better albeit very slowly though. It's been a real shock to your system and you need to give your time to come to terms with it. When I was at the stage you are in, I was angry, sad and devastated by it all.

You will get some really helpful advice in here and if you feel like a moan or a rant have one, cause it does help.

I did, at one time consider one of those motor scooters but the finances wouldn't allow it. What colour is yours, I would only have had a "Go faster Red" though.

Buy a couple of black and white flags to put on your scooter, that way you won't be called an emmet!:-)

3 likes
Reply

My scooter is a hot orange called Flosie. I bought her second hand and she is a God Send.

1 like
Reply

How "cool" is that, she sounds like a dream machine!;-)

1 like
Reply

I don’t know how to advise you but I am so sorry you are having such a bad time xx

1 like
Reply

Aww daisy, thank you, I’m sure it’ll be fine but it’s all a bit scary , ya know x

1 like
Reply

Cairn

Just relax and try not to stress too much.

Does you holiday place have a view..............if so just sit and enjoy.

It is early days and only 4 months into this strange journey and it takes time to process what has just come along out of the blue. Then you need to gain knowledge and you have started by posting here. Knowledge is power and you are not alone, there are are whole heap of people who can and will help you.

There are three websites and there are support groups (actual people). You can find out if there is one near you by going to pmr-gca-northeast.org.uk, clicking on the Map of the UK and following the links. There is a link to the PMR&GCA UK (the national charity as well as the Scottish Charity).

Me, GCA 5 years (no PMR) and then remission and still ongoing. That is after a wheelchair, zimmer frame and walking stick. All relegated to the garage.

7 likes
Reply

Thank you for all your very helpful Advice

1 like
Reply

Hello cairn

you are having a bad time and I do feel for you - it sounds very very frustrating. I am wondering if what is going on with your legs is related to the GCA - you didn't say if you were diagnosed with PMR as well - but as you are on a 'high dose' of steroids and if the diagnosis is accurate then you would have some relief from the limb stiffness which can be caused by that. Muscle weakness can also develop as a side effect of Pred - but I think you need to clarify with your doctor the causes of your lack of mobility to be sure what is going on - like your 'legs giving way' - I am no expert but this sounds a bit unusual to me. Anyway I hope you manage to get some greater clarity and be able to manage things better - and most importantly feel much better soon.

Best wishes

Rimmy

1 like
Reply

No I was not diagnosed with PMR but I think just GCA is enough! Thank you for your help.

Reply

Rimmy

'I am no expert but this sounds a bit unusual to me'. I am no expert either but whilst it is very unusual the same thing happened. Wheelchair, zimmer frame, walking stick etc.

PMRpro recommended Bowen therapy - I resisted for a year, then gave in (she is a good friend) Bowen helped me out, do not ask me how, I just think of it as 'magic'. I still keep a folding walking stick for rough pavements.

Eventually the medics thought (emphasize 'thought' it could be because of a problem I had had many years ago with the 'trio' - Hippocampus, Pituitary and Adrenal Glands and it took sometime for them to 'catch-up with each other.

Now re-reading this is sounds crackers, but it is what it is.

Think 'Vasculitis' and the fact that slowly but surely, it is beginning to be realised that PMR are not just 'Sisters'. I would bet my last penny that it will turn out the PMR will finally be recognised as the same family.

The best thing that is happened over the last 11 years is more research and a much higher level of interest in PMR and GCA.

Reply

Interesting jinasc - thanks for this info and the benefit of your experience - and I agree it seems very likely that PMR and GCA are more interrelated than has been thought to date. I wasn't aware however that GCA 'caused' such an extreme lack of mobility - which sounds horrendous. I have PMR and GCA and have been fortunate that Pred 'dealt' with the mobility/stiffness/pain elements within hours of my first dose - my GCA arrived a few weeks later and 'felt' very much confined to my head in terms of symptoms anyway. I have also had mobility issues recently however as a result of a reasonably common Pred side effect - myopathy which is also linked to my straining my Achilles tendon. Some very painful nocturnal cramps seem to have subsided a bit and I am back to walking more like my 'old' self as I try to taper down as soon as is possible to reduce this 'side effect'.

Many thanks

Rimmy

Reply

Rimmy

I have no, repeat, no medical background what so ever..............just paid into NHS and never wanted my money back - I got it back with interest and I owe them so much that even if I won the lottery, big time, I still don't think I would clear that particular bill.

I don't think it 'causes' Cairn is the first person I have come across in nearly 11 years, I nearly fell off my chair in surprise.

I never had PMR and I have often wondered whether it was because I was quickly diagnosed, put on high doses and the PMR was wiped out. Do not take that as being a sensible idea - I just wondered. Remember PMR causes the oxygen supply to your muscles to be impaired. I know zilch about myopathy but it sounds a good idea not to encounter it. I hope you get some relief soon.

Rimmy take a look at Bowen.............it does help some of us and you will know within 3 weeks with a 1 hour session per week and making sure you drink the water. If no improvement after three weeks it is not for you. I found Bowen Therapists (the registered ones) totally honest, I was told at the first appt, if it does not work within the three weeks, so I then knew they were not just after money.

If you put Tom Bowen- Australia in you search engine you can read up on him and in OZ, so I am told, you go to a University to be taught the technique.

2 likes
Reply

What medications were you put on besides pred?

Reply

There are loads, proton inhibitors, aspirin Vits C and D for bones, iron and paracetamol for any pain but I try to avoid too much extra drugs.

Reply

I asked because some of the common ones could cause the diarrhoea - and it must have started about the time you put on pred. PPIs are very guilty of causing gastrointestinal problems - it would be worth asking your doctor if you could stop the PPI (proton pump inhibitor) and try ranitidine which does the same but in a different way so doesn't have the same side effects.

While the PPI on its own may not have caused the problem, once you are taking several things the interactions are relatively unknown.

1 like
Reply

Are you also taking any of the PPI medications ( often prescribed to protect stomach from Pred side effects) such as Omeprazole or Lanzoprazole? I experienced awful diarrhoea with both of these medications such that I couldn’t leave the house...... members here suggested other measures to protect the stomach and I’ve been fine eating natural yogurt with my breakfast which is when I take my Preds.

Hope things improve for you soon.

1 like
Reply

I have been taking PPI for over 20 years because of other issues, but they have never given me upset tummy like this.

Reply

I cannot add to the previous posts,l am so sorry that you are feeling so bad.Please keep posting ,we all care and there are those withGCA,who will help you as much as they can.l wish you a nice holiday even though your mobility is limited,the fresh air and beautiful scenery will be good for you and l hope that things improve for you before too long .

1 like
Reply

Dear Cairn,

I understand what you are going through and I just wanted to send you some love and healing vibes. I was diagnosed on 13th Aug and my world turned a 360 circle. Its so different for everyone and all the advice on here is amazing. I dont know what I would have done without it. I am counting my blessings as I learn more about this disease but it doesn't identify who we are. I have now found strengths and qualities that I didn't know I had because I have to take time out. its really 'rubbish' some days and thats okay; other days I realise that I am one of the lucky ones. I still have my sight and I am determined to enjoy something about each day, even if its just a nice cup of tea from a nice cup. Enjoy Flosie - she sounds like a ray of sunshine and despite feeling 'rubbish' some days when people see you coming, if you can manage a smile you usually get one back.

I have been doing some very gentle yoga (done it for many years) and actually now realise what it means to sit still and try to relax to stop my head hurting. I used to rush to fit everything in and not get any of the deep benefits. You can do very simply movements sitting down and if you do it with good breathing its just as effective as jogging around the park. GCA whilst being a massive wake up call is also teaching me about myself a day at a time. Good luck today. x

3 likes
Reply

Try this to relieve your head.

Every hair on your body has a little muscle at the base, so spread your fingers through your hair and gently tug all over.

My hairdresser who also teaches at the Uni told me this when I was diagnosed with GCA. I have since kept passing it on. They also offer Shiatsu hair washes in his salon, from what I can understand, it came from or is part of Shiatsu. I have told him he cannot retire yet he just had his 60th Birthday and has been my hairdresser for over 30 years.

It helps 'normal' headaches and when you are under stress........

1 like
Reply

wow, thats a great idea! Some days my scalp feels a bit 'nervy' so I have had a reflexology session but gently gently I will try. x

Reply

Hi Cairin, I was diagnosed with GCA & PMR in November 2017, and I still have days where I feel like that! Legs weigh a thousand pounds, fatigued, cold sweats... You have been on this journey only 3-4 months, so I am not surprised you are experiencing a multitude of symptoms/side effects. What dose of Pred are you taking and are you actively tapering.. I had more issues with steroid withdrawal than I did with steroid side effects!!!

1 like
Reply

Started at 60mgs. Now down to 30mgs. Being tapered ofgradually

1 like
Reply

Wow! That sounds fast... 60 mg to 30 mg in 3-4 months? I am at 30 mg now as well, but was on 60 mg in February. I reduce by 5 mg every 30 days. I have had a few anomalies where I had to stay on a dosage longer or increase it slightly for a short periods of time. When I was reducing by 10 mg I had a terrible flare. Perhaps you are experiencing steroid withdrawal symptoms? I wish you the best and hope teh GP or Rheumy sorts it out soon.

Reply

Thank you. I am so green at this. I am so swollen and it does my seem to let up. I cannot look down as I have this enormous double chin and ledge on back of neck. Thought with reduction this mall might reduce as well.

1 like
Reply

Yup, I understand... it is something we all struggle with. We feel horrible, tired, out of sorts and when we look in the mirror, we don't even recognise that person. You will be fine, I promise... you are only 3-4 months in. It gets better! I am 10 months in and remember at the beginning people telling me it would get better and I kept thinking that I must be dying! Seriously! I was sure I would die! ...but I didn't! I am "okay," not great, but MUCH better than I was. I have good days and bad days.. but not like it was back in Jan/Feb when it was really bad... Since diagnosed I have written a blog, it helps me cope with all the PMR/GCA bullshit... maybe some of the posts will help you or at least make you giggle. Here is the link. >>>>https://rantingsofamadwomanblog.com/

Reply

As you get lower - 5mg - you will notice a difference in your cheeks, the frog throat and back of neck will lessen but might not go until off pred, after 4 years I'm on 4.5mg and still have them - my rheumie said they will go but only once off the pred and take about a year. Hang in there, literally we all are... Don't try to rush it as you're likely to yo yo back and forth, take it slowly and you'll get there, taper will slow really down when you get to 10mg and lower. Don't freak out about the 4 years you just might be better at it than me, I've suffered withdrawal symptoms all the way down and it does elongate the taper. The first year is the worst and it does get better, look at the photos of the AGM and see the beautiful, 'normal' looking ladies - they have the illness and look at them now, should give you a lift. In the meantime try to take it a day at a time and tell yourself it will get better because it will. ATB.

1 like
Reply

I really feel for you having gone through a very similar time with GCA.

You can feel seriously unwell with it, like you I kept thinking I had some other illness as I felt so terrible - I was lucky to have a very caring doctor who kept reassuring me that I hadn't. Also the high steroids can make you feel very anxious and nervy. You do feel utterly exhausted and doing anything is tiring even just getting dressed in the morning used to finish me off. The steroids do have a major effect on muscle strength, so ones legs are very weak but it is important if you can to try and take a little bit of exercise, although I think for the first few months I did very little as I didn't have the energy. So important to rest if you can as well, if I got tired I definitely felt much worse. I was prescribed Ranitidine to protect my tummy from the irritation that steroids can cause - it has been very effective, no side effects. As for your skin the steroids cause it to become very thin and dry so you have to be so careful not to bang it otherwise you end up with broken blood vessels under the skin which looks horrid.

Steroids also lower your immune system which is why you pick up infections very easily. GCA is not easy to come to terms with because it has such a big impact on your life, try and learn as much about it (I was told nothing about what to expect when I was in hospital), I just wish I had known everything I know now so one understands what is happening to you and then it is not so scary.

This website has been my savior, everyone so helpful and comforting.

So good luck.

Sho Sho

1 like
Reply

Thank you very helpful

Reply

Hello Cairn. Sounds just like GCA to me. Welcome to the club.

Sho-Sho has said everything I might have said.

I was diagnosed w GCA in Nov 2016, and my experience was v similar. I tended to think that the severe muscle weakness was mostly a side-effect of steroids, but it's difficult to know which symptoms are due to the GCA itself, and which to the steroids. I also got steroid-induced diabetes, which I've had ever since.

All sorts of weird symptoms come and go. It seems strange to me that no medic ever told me what to expect. This forum has been a real life saver.

Things will gradually improve, but you can't rush it.

I found the first year a very contemplative time. As I couldn't do much, I did develop acceptance, and a different way of looking at the world.

The second year has been more 'up and down'. Both the 'deathly fatigue' and the muscle weakness are much less, but have not gone. I still use a stick, can't walk far, and have been finding it hard to reduce below 7mg. But I've had patches of feeling quite a lot better, and know it won't last forever. And it does vary from person to person, so you might be lucky.

Almost from the start, I went on a minimum carb diet. This was because of the diabetes, but also had the advantage of avoiding weight gain. It does help. Still a bit wide round the middle though! Like all of us, I developed moon face and chipmunk cheeks, but those are almost gone now.

Take it easy. Rest as much as you need to, and try to focus on the little things that make you happy. Somebody suggested a nice cup of tea in a nice cup - sounds good to me!

Very best of luck.

Reply

I completely understand, I have been sick since Jan 2018, I was finally diagnosed with GCA/PMR in May. In the beginning I fought this illness with all that I had, then I found this site and began to come to the realization that for awhile my normal routine has been sidelined. I want to encourage you to come here often. There are some amazing people here who have been where we are right now and they will help you as much as possible. Here's to better days ahead.

1 like
Reply

Thank you. It looks like we are in tandem except I am still fighting and losing xx

Reply

Stop fighting and go with the flow. Then you can't lose and you will have more energy to do what you need/want to do. Nothing you can do at present will change things and with time it will all come right.

Reply

Hello

So sorry to hear how poorly you feel. Just a thought...are you taking Omeprazole to protect your stomach? My G.P. told me this was famous for causing diarrhoea .I was prescribed Lazoprazole instead and the trouble stopped. We are all different and react differently to medicines, but maybe that's the culprit.

Reply

I called the Hospital help line for Rheumatology and was asked to go for an urgent blood test. The Consultant has rang me to say the GCA is active and the CPR levels were raised from single to double numbers so my steroid dosage is going back up to 30mgs for a month and then lowering 10mgs over the next couple of months.

Reply

Too fast - slow down the reduction and you are less likely to relapse. And in the long run you will have taken less pred.

Reply

You may also like...