HI FOLK, I'M A NEW KID ON THE BLOCK

Hello Wondercass and welcome to the forum although we're always sorry to hear that it is suffering that has brought someone here!

It does sound as though you've been on a bit of a roller coaster both here and in Spain! It is very common to have flares during the first year or two of treatment and I certainly increased back up to 10mgs of Prednisolone from a lower dose after two years. I haven't ever taken Methotrexate but one or two people posting here do take it and I'm sure they will be along with their experience of that drug. Also, if you go to the PMR-GCA UK North East Support website and click on \"Our Stories\" you will be able to read about someone's journey with Methotrexate.

If you haven't already been referred back to the rheumatologist, I think if it was me that would be my preferred option at the moment.

I'm sure you'll get lots of valuble advice and information from the wonderful people on this site.

Very best of luck.

MrsO

hello welcome to the site but sorry to hear you are feeling so poorly

I thinkl everyone on here has only been put on Methotrixate if they havent responded to steroids so it does seem a different treatment to the norm

It is possibly because you have had this for so long and havent really been treated as the standard guidlines when you should that they have added in Methtrx Im sure I read somewhere if you arent treated early enough you dont respond to the normal doesages

I have had PMR twice ( clear for 3 years in between ) I started on 20mg of steroid both times The first bout lasted 2 years and the 2nd year was only a maintenance dose of 1mg The 2nd bout of PMr has now been going for 2yrs 7mths I had got to 4mg in 14mths complete blip and within a month was back to 15mgs !! It has now taken me another 17 months to get to 2mg by some funny reduction progs I have worked out myself with information I have gained from this site and the \" Oracle \" PMR/GCA Fighters North East I realised from the information I have picked up that my first bout going so quickly isnt the norm but my 2nd bout with all its ups and downs is pretty standard

Methotrixate I have little knowledge of except for 2 other people I know who take it for other illnesses and seem to have worse side effects than those of steroids so personally Im hoping steroids will do the trick for me

Do you have bloods taken and if so are they a good indicator of how you are feeling ? Mine are

Im sure Eileen who has a huge medical /scientific knowledge will join in with a lot more technical information and others but do keep on posting and someone will help you

Best wishes

Mrs G

New Girl here again, (Wondercass)

Thank you so much for answering so quickly, you are stars!

I have an appointment with Rheumy on 26th May (every 6 months).

I have blood taken once a month and my inflammatory markers are sky high again and my white blood cells have put on a bit of a spurt.

Just when you think you've cracked it, back it comes. I look terrific at the moment with my neck collar and purple crutches. I have a wedding in Worcester 4th June and I'm just wondering if silver Niki trainers will look good with a pink Fascinator and handbag? I have some gorgeous shoes but as you must know, there is no chance!!! Have just applied for a blue badge after all these years. It was a case of not giving in before, but I have finally thrown in the towel and will admit to being disabled. Will keep you posted for anyone else that needs one.

Interesting about the Methtrx maybe they left it too late for me?

Thank you for being there, it makes such a difference, I feel better knowing someone understands. Fondest wishes to you all x

New Girl here again, (Wondercass)

Thank you so much for answering so quickly, you are stars!

I have an appointment with Rheumy on 26th May (every 6 months).

I have blood taken once a month and my inflammatory markers are sky high again and my white blood cells have put on a bit of a spurt.

Just when you think you've cracked it, back it comes. I look terrific at the moment with my neck collar and purple crutches. I have a wedding in Worcester 4th June and I'm just wondering if silver Niki trainers will look good with a pink Fascinator and handbag? I have some gorgeous shoes but as you must know, there is no chance!!! Have just applied for a blue badge after all these years. It was a case of not giving in before, but I have finally thrown in the towel and will admit to being disabled. Will keep you posted for anyone else that needs one.

Interesting about the Methtrx maybe they left it too late for me?

Thank you for being there, it makes such a difference, I feel better knowing someone understands. Fondest wishes to you all x

Hi and welcome - better here than not but better not here! However - you have PMR!

I had had PMR for at least 5 years before it was diagnosed and I responed straight away to 15mg pred and had a perfectly normal course reducing until last summer when I had a flare (almost certainly due to underlying infection) and have struggled to reduce since then with severe pain returning within a couple of days. However, I am now reducing by one quarter of a mg/day and so far it's been OK :roll: :wink: so having said that, I'll keep my fingers crossed.

If you look at the top of the page you will see search experience - if you enter methotrxate in the box you should get a list of all the posts here which mention it, it was discussed quite a lot a few months ago. There are small scale trials being done looking at its use in PMR, it is commonly used as a drug to reduce the amount of steroid used in other diseases but the results in PMR seem to be mixed. At present the consensus amongst the experts seems to be it should be kept for when a patient is having real difficulty reducing the steroid dose or MUST come off steroids for compelling reasons - having a lot of other things adversely affected by steroids such as diabetes, osteoporosis, high blood pressure and so on. Also it should be considered after a couple of relapses.

I wouldn't take it myself at present. It is used in rheumatoid arthritis, it doesn't always work there either. It is also a drug with a lot of restrictions and side effects and I do feel it shouldn't be flourished immediately someone is diagnosed with PMR.

It is a \"steroid sparer\" in this case. That means it might mean you can take a lower dose of steroids (which is a good thing) but not necessarily. It also does NOT necessarily mean that you can take it instead of the steroids - maybe, but not 100% certain. In PMR the steroids are used to reduce the inflammation due to the underlying disease to a level at which you can function with it. You give a dose to reduce the pain and stiffness, usually 15 to 20mg/day, and then start to reduce the dose to the lowest level that keeps it under control. The PMR may go into remission (stopping the inflammation effect) but until it does you will need a dose of steroid to keep the inflammation under control. Once you get to that lowest possible dose, you have to stop the reduction or you will just be back at square one. If you keep each reduction very small, you can react quickly if the new dose is too little and return to the old dose without too much of a problem. I'm now reducing at such tiny steps because previously even 1mg drops were too much for me to cope with and the pain was right back. This seems to be working. After 20 months on steroids I have reduced from 15mg/day to the equivalent of 8.5mg/day as of today. I have relatively little pain - as long as I don't try any heroic reduction or overdo it. I certainly don't need crutches (not that I could have used them the way my shoulders and arms were :roll: ) although fancy shoes are a thing of the past - long past!

If your ESR is sky high I would tender the opinion that going up to 10mg from 8mg may not be enough - a few days at 5mg above the current dose is recommended in some medical textbooks to deal with a flare with a quick drop back to just above the dose at which the pain returned. Then the reduction should be tried again after a week or so to stabilise. And most of us don't find painkillers do anything for PMR pain.

And in connection with the sky-high ESR - how high, and is it higher than at the beginning? And is the pain the same as at the beginning or is it different, in different places? Why have you got a collar - do you have a bad sore neck, scalp pain, headache, eye problems? As you have had PMR you are at risk of developing GCA - and whilst I don't want to scare you, that is a very different kettle of fish as without treatment you could lose your sight. And it doesn't appear with

Hi Wondercass & all,

So sorry you are having such a rough time :cry:

I had to see my gynae today, as yet again, I had un-explained post menopausal bleeding :roll: .(sorry guys...know this is alien territory)

The only thing that he could find was that I bled extremely easily, probably because of the steroids as I also bruise externally at the slightest knock :shock: .

I mentioned to him that I was seeing my rheumy on thurs and he was probably going to suggest methotrexate again .The gynae was quite adamant that I should NOT take the metho unless absolutely necessary as he felt I had enough clotting problems with my blood with-out introducing a drug that could make them worse :roll: .

I wasn't keen on the metho to begin with.....but my gynae's aversion to it has made me even more so

Will let you all know how I get on with the rheumy....hopefully the bloods will be OK this time 8) .

Love to all, Pauline.

Wondercass

In the BSR Guidelines on diagnostics and treatment of PMR.

It is recommended that methotextrate is not introduced till you are down to 10mg per day. Unless you are allergic or having difficulty with the pred.

visits either the BSR site, NHS site, or www.pmr-gca-northeast.org.uk and on the last site, click on Useful Medical Information, scroll down and find the guidelines and have a read up.

Also on that site, is People's stories and you can read about a person's experience with metho.

One thing, neither Pred or Metho is a cure. They alleviate the symptoms so you can live as comfortably as possible. They is no known cause either.

Love the name Wondercass. Good Luck

Hi Pauline

Sorry to hear of your worrying time with the bleeding but very reassuring news from your gynae today. Like you, during my time on Prednsiolone I have bruised or cut the skin at the slightest knock and such cuts easily bleed so what he has said does seem to make sense. Good to have his backing when you do battle over MTX with the rheumy on Thursday! :wink: Good luck.

MrsO

Hi Friends, because that's how I now think of you all. Thank you again for invaluable info.

I increased pred from 8mg. up to 10mg as this flare up is a doozy, but it is 5 days on and I don't seem to be improving, so I will do as Eileen suggests and increase to13mg. it makes perfect sense.

I take Prozac 40mg a day but I've still been feeling low and crying, pain killers help lift my mood but do nothing for the PMR.

I also have the usual Alendronic acid one a week + Folic acid 3x a week to help with the headaches and sickness caused by the Methotrexate.

I wear the collar to take the weight of my head off the neck and shoulders on the left side (that does help a lot) I have regular eye tests and xrays and although my left eye sight has deteriorated slightly they don't seem to be too concerned about GCA, but I am aware that it's down to me to keep a close eye on things (no pun intended) .

I see my rheumy on May 27th so I will ask about Metho and the need for it in my case (or am I just a Guinea Pig) I hate the vicious stuff.

Well folks I'm off now to see if can fill my hangingbaskets without tears.

Good wishes to all, Wondercass.

P.S. I chose WONDERCASS for my nickname as CASS is short for Carmen (yes, that's my name) and WONDER because I do that alot.

bye for now ! xxx

Hello again Wondercass (Carmen!)

I'm sorry to hear that you're pain hasn't improved after increasing back up from 8 to 10mgs.

Although guidance is often given to increase back up to the previous dose if pain worsens, everyone is different in how they respond to both PMR and steroids, so one size doesn't necessarily fit all - it is a very personal journey.

Certainly, in my experience of flares whenever I tried to increase back up by 1 or 2 or even on one occasion 3mgs, it never worked. For instance, I remember my rheumy advising me to increase from 5mg to 10mgs on one occasion for 2 weeks, then 7.5 for 2 weeks followed by alternate days of 7.5 and 5 for 2 weeks. Once back on 5mgs I was advised to stay there for several months to ensure that the inflammation stabilised this time as this was the dose where it had previously gone wrong! So although I took a fairly large increase to get it under control it was easier and faster to reduce back down to 5 this way for me.

I feel I was lucky in that I always had the 'luxury' of blood test markers to guide me before each reduction - if they had increased then I was advised not to reduce. Some people don't have this 'luxury' as their blood levels stay the same in spite of having PMR.

As for MTX, it isn't long now until you see your rheumy so it will be interesting how he responds when you query this with him.

Meanwhile, hope the pain eases on the bigger increase but be very careful with those hanging baskets ! :wink:

MrsO

Snap to the easy bruising.

With all the lovely sunshine and bare arms I do not look a pretty sight. Horrid purple blotches and worse. I am terrified to use bog standard elastoplast to cover the torn bits as I am afraid taking it off will just cause more damage. Anyone have a solution?

My arms are wrapped up in strips of old sheet. I hope my mum's method of sterilising with a hot iron really works! ( the bits of sheet, you understand, not my arms. ) :roll:

Having got them covered and secure I have returned to my veterinary glove for the shower. Pale green; very fetching.

Hi Betty

Oh, I do sympathise. If it's just bruising I use arnica. However, if the knock has cut the skin then I tend to just smother it in antiseptic cream whilst it heals. The resultant purple patch takes ages to disappear though. At least at the moment I've got matching ones from knocking an arm on the corner of the border tiles as I was getting in the shower and a few days later doing exactly the same to the other arm whilst getting out! I seem to misjudge my distances sometimes and lose balance on others! :roll: Of course, we're more vulnerable now that it's summer and we've left off our protective winter woolies!

I don't seem to get as much easy bruising since I have got so low on the steroids and I'm sure that once off them the skin will eventually recover from the onslaught......age permitting! :wink:

At least you've found an alternative use for the veterinary glove! :lol:

Hello Betty

Would the Pharmacist be able to help with dressings or suitable plasters ??

A friend who has had asthma forever and been on steroid control bruises very easily and has thin skin and she has decided the only answer is to cover her arms with long sleeves most of the time She choses her clothes to suit this problem She also has a little dog who will catch her hands reguarly She does where plaster sometimes and I think they might be the hypoallergic ones which are quite thin (Shes away at present so cant ask her )

Im forever cutting and scratching myself when Im working at my field but they all heal but I wouldnt say my skin was that thin and Im a great one for bumping into everything in sight

Hope you come up with a solution

Mrs G

In response to the postings from Betty E, Mrs O and Mrs G about easy bruising.

I too have a real problem with this and my skin is so thin it tears easily. Just last week, I knocked my arm - not very hard - on a metal notice when climbing over a stile and despite the fact that my arm was covered by a fleece - it still tore the skin and bled profusely. Fortunately I was carrying elastoplast and was able to cover it straight away. I find the best way to remove elastoplast is to soak it in a warm bath for a while and then - if it's still sticking to use surgical spirit to dissolve the adhesive.

The best product I have found for repairing and protecting torn skin is alginate dressings (made by a reputable antiseptic manufacturer) and available from most high street pharmacies including Boots. The dressing is waterproof but breathable and it is recommended that you keep it in place for 3 to 7 days for best results (I certainly leave it 7 days). These dressings prevent the wound from drying out and lessen scarring. They are quite expensive - but worth it as far as I am concerned.

I have not found that arnica helps with the bruising - at least they don't fade any quicker.

Mrs O - you said that you don't bruise as easily now you are on a low steroid dose - how low is that? I am currently on 5mg but haven't seen any improvement.

I now try to buy long sleeved tops to cover my unsightly arms, but how difficult it is to find anything nice from summer stocks in the shops - nearly everything that isn't frumpy has short sleeves. I have resorted to overshirts or thin cotton cardigans to wear over my short sleeved t-shirts.

Bye for now

Hilary.

Thanks, everyone.

Will certainly try the expensive dressings. I like the \"breathable and leave on for 5 - 7 days.\" Luckily, although I tear as easily on 4.5 as I ever did on 15, I am a good healer. Maybe that fierce immune system that is probably one of the roots of the PMR does have an up side after all. :lol: