Newly diagnosed

[Janbu]

A short history, followed by a question....I'm a retired nurse living in St Lucia but return to UK at least once a year. For two years I have been experiencing painful stiff hips, some weakness, joint pains etc and put it down to weight gain and age. Last year I experienced Headaches for several days, increasing in severity. I was given a CT scan which showed a ? Lytic lesion .I returned to UK and was admitted to hospital. On admission I was treated for GCA as all symptoms pointed in that direction but as I was armed with scans and x- Rays they were also of concern. I was seen by several "ologists" and eventually slipped through the cracks as no diagnosis was made and fortunately the lesion on my scull was benign. I left hospital on 60mgs of prednisone to be tapered off over two months and also prescribed lyrica to treat the neurological pains. I gained 20 lbs, which I have now lost, headaches disappeared but was still left with sciatica, stiffness ,painful shoulders and hands. I came to the conclusion that this was my lot in life. I never regained my mobility or mojo!

Three weeks ago pains in my neck , side of face and over eye settled to my left side of forehead. A pain like never before. My Gp escalated the pain relief each time I presented but I was eventually admitted to the hospital, my ESR was normal a few days before and had increased a little when it was again done on admission. I was treated with IV steroids, tramadol, gravol and paracetamol and when I became settled and pain free was allowed home. My Gp then started me on prednisone 40mgs, per day, to be reduced by 5 mgs each week .I am to see a rheumatologist in about five weeks time. There are no experts here, even the eye " specialist " was a little bemused as to why I had been sent to see him, after experiencing visual disturbances with my headache.

So I've been given a diagnosis of GCA but am already aware I will be managing this illness through my own efforts. It's not a common disease in the Caribbean! I want some good , clear research information , for myself and hopefully my GP.

I am four days into taking prednisone 40 mgs daily but am still having to take paracetamol and tramadol to control the headache, am I expecting too much too soon. The biggest positive is I am more mobile than I have been for two years, the body is free of pain, stiffness and I'm no longer walking like a weeble.

Apart from not over eating, which will be difficult as my appetite has come back with avengance , will I gain weight again and has anyone found a regime that can fight off the steroid effect?

[PMRpro Ambassador]

I have just sent you a message with a list of links to sources of useful and reliable information about GCA and PMR. I've copied and pasted it on the forum before but last time I tried it was blocked - too many links I suspect.

Has the 40mg made a big difference? It should - and if it hasn't maybe you need more, 60mg to start, particularly if you have visual disturbances. See the Quick and Kirwan paper I have recommended for a potted managing GCA article. It gives a reduction scheme - your GP's is probably too fast so discuss it with him. The paper is aimed at GPs, he shouldn't get miffed.

You probably will gain weight again, particularly at the high doses - but I have successfully lost 38lbs by cutting carbs drastically. That also helps avoid the potential risk of pre-diabetes.

Once you have done your reading - come back and ask the specific questions. I could write here all day - but I won't!

Let me know if you need more or the links have not worked.

[Janbu in reply to PMRpro]

Thank you so much, I am looking through the links now. The 40mgs prednisone has not eased the pain much ,as I am still having to take tramadol and paracetamol twice a day as the pain in jaw and headache returns quite quickly, so maybe it just hasn't kicked in yet? This is my forth day of treatment. The weight has already increased by two pounds and I am trying hard to ignore my hunger pangs.

I will send on the info to my Gp and suggest maybe upping the dose to 60 mgs for a week or so, especially as I am trying to be well enough to go on a long planned sailing trip next week that involves a lot of other people that I can't let down!

What a great resource this is for both information and support, I'm feeling quite reassured that there are people out there that can react to my questions and fears. Thanks

[PMRpro Ambassador in reply to Janbu]

Hmmm - sorry to be a party pooper but I'm not entirely sure about a sailing trip, especially if you are expected to do a lot. And how difficult would it be to get to a doctor if you needed one urgently? One lady headed off to Spain and ended up spending much of the trip in her hotel room because the pred (and maybe the GCA) made her very wobbly and she kept falling.

In both PMR and GCA the appropriate dose should achieve a good relief of symptoms within a few days at the most and a return of pain really does suggest the dose isn't high enough. The eye specialist should have been looking for signs of AION - anterior ischaemic optical neuropathy, which commonly happens with GCA that is affecting the blood supply to the optic nerve and is what can lead to loss of vision as happened for Dorsetlady.

If your doctors would like an expert contact in the UK I'm sure I know someone who would be pleased to advise. There is a non-white lady on another forum, part African American, part Native American, but you're right, there won't be many patients with GCA/PMR in the Caribbean! Though I'm sure there will be some Scandinavian genes floating around there somewhere...

[Janbu in reply to PMRpro]

Good point...but as treatment here is limited anyway and I'm heading for Grenada where it's better I think I should be OK. I won't be doing anything other than taking it easy on the foredeck , I have my GP's cell number and St Georges medical school comes highly recommended. There are flights out daily from wherever we are, back to UK. Fingers crossed!

[PMRpro Ambassador in reply to Janbu]

Fair enough - just make sure you have a few tons of pred with you! Are you taking ranitidine or omeprazole?

[Janbu in reply to PMRpro]

I take Omeprazole 20 mgs daily. The pred has been upped to 60 mgs, for the next four weeks. I'll take a stash of pred with me as suggested. Couldn't happen at a worse time, got kids flying in on Sunday, house sitters arriving on Monday, setting sail on Tuesday, meeting up with the other kids by Easter. At least I won't have time to sit around and feel sorry for myself. I also have a sister, who has had this GCA/ PMR for last 2 years, who is great and guided me to this support group.

Big thanks to everyone.

[PMRpro Ambassador in reply to Janbu]

Ahhhhh - insider knowledge! Have a lovely time - and do consider joining one of the other forums where we have a photos section for holidays, families, gardens and pets and which in general works like a virtual support coffee morning. You can't keep this trip all to yourself!!!!

[olive2709]

I was diagnosed with GCA September last year don't drop your dose I was on 40mg a day for 6weeks then 35 mg for 4 weeks being reducing slowly since after 6month's going down to 18mg this Sunday iam at sisters today web addresses you need are at home someone will put them on here before I get a chance down load and take to GP

Good luck God bless Olive

[Janbu]

Thank you Olive, good advice, in fact I'm suggesting to my GP that I up my dose to 60mgs daily as I'm still taking powerful analgesics to control head and jaw ache after having no true relief since starting steroids.However all my limping and aches and pains have disappeared from the rest of my body!

I hate taking medication ,so if I could get of the tramadol and paracetamol I would be very happy.

[DorsetLady PMRGCAuk volunteer]

Hi,

Agree with others, the dose you are on is not enough for GCA - been there etc... You need to ensure that your sight is protected, after reading PMRPros excellent links, you should know that you have to go back up to 60mgs. Unfortunately you will be liable to side effects, increase in weight being one among many! But take it from me, you can lose that extra weight in time, and overcome the other side effects but you cannot regain your sight once it's damaged.

Sorry to bang on about eye sight but it's my aim in life to stop others suffering the way I did! DL

[Janbu in reply to DorsetLady]

Thank you, I would bang on about it too!!but I don't think you are, you are just making sure we don't get the same raw deal you got. My eyesight is already poor, any more loss would severely hamper my life style. The weight gain saddens me as I have just lost 25lbs from last years steroids and lyrica, it took discipline and time so I know I can do it again, i just didn't want to see them again!

[DorsetLady PMRGCAuk volunteer in reply to Janbu]

I know where you are coming from, but maybe you might not put as much weight on as last time. Having been through it once, you might not be so prone, and know what to eat and what not to eat. But it is a bore nevertheless, especially if you have to cut out the alcohol! That's a downer!! Enjoy your sailing trip, wish it were me. DL

[daveD]

Once again top notch advice,Well done,

[Dovelady]

Well done Asdip getting on to this forum. I bet your sister also told you to up your steroids to 60 and was horrified at the initial low dose!! Ok I will come clean, I am your sister!! The advices above is all valid and the links that PMR Pro will have sent are particularly good especially the stuff for the GP, it's not a rare condition but it's certainly not common. A doctor I spoke to recently told me that me he might encounter two cases every three years but he does know some doctors who have not seen a case in twenty years, although just think that might be not diagnosing any in twenty years! The weight gain is one of the horrible side effects and it takes every bit of willpower you have to not eat. Steroids are the Devils Own Drug but don't worry we have our own mini support group. 😄Have great holiday and take it easy.

[Janbu in reply to Dovelady]

Haha, I knew you'd find me! I can't get over the profound effect steroids are having, I'm just about to get up and go for a dawn walk with the dogs...been awake for a while but I'm moving around like a fit person, suddenly full of energy and huge optimism, does this last?

[PMRpro Ambassador in reply to Janbu]

Haha! No escaping here!

Yes - the dose you are on is more than enough to deal with the PMR part of this. It will last a fair time on high doses - but as your sister says, really don't overdo it as you are still ill and need rest to allow your body to deal with that.

[Dovelady]

Ah, Steroid Euphoria! Do not do too much, stop and sit awhile now and again. It's very easy to overdo it without even knowing and you can

make everything worse. I'm sure the pros will tell you pretty much the same. But it's great that you are feeling so much better, long may it last.

[Janbu]

The pain in my temporal area has finally abated and I have hardly taken any pain relievers for several days. Life on a boat is easy, I sleep when I get tired , which is often as I seem to be awake for several hours from 2 am onwards, finally drifting off again at around 6 am for another hour. I am also really hungry during that time! My eyesight has changed significantly, my varifocal glasses will need to be changed as the far sighted bit is blurred, in fact better without glasses and the near sighted is not strong enough....is this now a permanent change?