PMR and DLA Benefit

Hi Mrs O

Went to the doctors and I told him that increasing from 7.5mg to 20mg hasn't made much difference. He was going to up them to 30 but decided to wait a week. He felt my jaw and said \"We will see how it is next week.\"

I ended up suggesting to him that I have a blood test and he said \"Thats a good idea, it may give us an idea of the treatment to give\". I noticed that on the blood test sheet he ticked ESR so not sure if it is the same test for CRP. I had the blood test this morning so watch this space! Thanks again for all your advise.

No CRP is a seperate test and it is normally written on mine I think whereas ESR is a tick box or could be the other way round !! I dont at present suffer from GCA (fingers crossed!!) so dont suffer any jaw pain 20mg worked for me with both bouts I have had within a couple of days but Im sure if you keep going back on this website you will find more information about GCA Also keep going back to the Dr until you feel better When I had it the first time my blood results werent classic for PMR so I had to see a RHeumatologist before they could be authorised I did go privately for this as the pain was escalating so fast I was crying in the morning just trying to get out of bed and I was fit before that Gym Aerobics and riding my horse so dont delay persevere with your DR !!

Hi Chisnal

I'm not surprised your GP didn't follow up on the jaw pain immediately - neither did the first 3 GPs I saw 2 years ago! But, according to all the literature and my Eye Consultant it is one of the main features of GCA. If you suddenly start experiencing any eye problems or severe headaches, don't delay in getting back to the GP.

ESR and CRP have to be written on the blood test forms as they are not in the tick box section. As far as my latest test was concerned it was only my CRP that was high and I understand that it is the CRP test that is believed by many experts now to be the most significant of the two.

Hope things turn out well for you.

MrsO

Mrs O

Very good advice I did tell my Dr about the work they are doing re CRP elevation as the first time around she remembered (After 6 years !! ) That was my problem This time they are both elevated Why it develops into GCA with some and not others I dont know Perhaps if you dont get the steroids early enough I still think it seems a bit of a DIY illness at the moment and find your advice very helpful

Mrs G

I think you've hit the nail on the head so to speak in saying it is a DIY illness (good pun there as well!!). Where would we be without each other and our various experiences from which I am sure we can only learn - it's so reassuring. It's especially DIY when you get below 5mgs as I've been told by the Rheumatologist that I should know the score now and to just go up and down as symptoms dictate - needless to say that has me in quite a quandary at this present time and I'm going up and down between 3, 4 and 5!

You're also right with believing that GCA occurs perhaps when you don't get the steroids soon enough - my experience was being bedbound with undiagnosed PMR in 2006 and only diagnosed with the onset of GCA in 2007, although by that time I seemed to have just recovered from the symptoms of PMR. I had just had a blood pressure medication changed and within a few days developed agonising head pain and loads of other symptoms, so the Rheumatologist believes the GCA was triggered by the change in BP medication because PMR was by then still lurking in my body. I also then learned from statistics that 7 out of 10 people who are not prescribed steroids for PMR go on to develop GCA whereas only 3 out of 10 people on steroids develop the condition. This may be helpful advice to anyone out there who tries to fight PMR without steroids!

Best wishes for your own recovery - you just never know but one day one of the experts out there might just hit on cure if the sufferers don't get there first!! :lol:

MrsO

Mrs O

Watch that CRP rate is should be no higher than 5.

Its strange, some Rheumy's and GPs say ESR should be half your age.

My Rheumy and GP won't settle for that - its got to be under 27. But as I have GCA they are more interested in CRP rate and somewhere, somebody told me and I wish I could remember where, that the medics were moving the emphasis from ESR to CRP for pmr as well.

mrs K

ps - we now have PMR-GCA UK and it has been registeredso watch this site for news.

We are getting there - but we are going to need all the help we can get to raise the profile of PMR and GCA for research into cause, cure and hopefully better medication. There is an Organisation in the USA which has started up and also a Foundation in Netherlands.

Mrs K

Thanks for the advice. Like you I have GCA as well as PMR and as you say it does seem as though the CRP is especially significant for GCA. I had massively raised ESR and CRP at the outset of PMR and then again at the outset of GCA, and it was always the CRP which was the last to get under control. I was told by rheumatologist that it was normal when at 8 last summer . However when it recorded at 12 last May my dose was increased to 10, so as you say I will have to follow up on this latest reading of 19 and will ring the rheumatology dept next week and hopefully get another blood test - I have finally increased back up to 4mg yesterday and already had relief walking today. I have noticed a slight eye symptom that I'm familiar with from the beginning of GCA - have you had any eye symptoms at any stage with your own GCA?

MrsO

Mrs O

Where you referred by your Rheumalogist to the Opthamology Department of your hospital when you where diagnosed with GCA. If not, you should have been.

I was not but I was advised to see an Optician immediately.

I did so and had an in depth examination - as the Optician (Specsavers) was well versed in GCA. My prescription was immediately changed and I was given lens that are light sensitive and glasses for driving at night, which are anti-glare. I have six monthly eye tests. One of which I have to pay for as under the NHS I am entitled to one free one per year. Yes, I could kick up and ask to be referred to the hospital opthamology department but my optician really takes an interest and is very very good. They also told me if I noticed any change whatsoever in my eyesight, however small - to visit them as soon as possible.

One fifth to a quarter of sufferers of GCA lose vision early (sometimes disastrously in both eyes. (figures taken from ARC Magazine Issue 138)

The RNIB also have statistics on how many of their people have lost totally or partially their sight due to GCA.

Yes, I did notice a deteriotian and they discovered the beginning of cataracts and also what they called 'spider's webs'. They were very pleased I could not see the spider's webs - whatever they are.

GCA is not to be messed around with - make sure you do all you can and make a fuss if you are not getting the right treatment. Its your quality of life you are aiming to keep as far as humanly possible.

mrs K

Mrs K

No, my rheumatologist didn't refer me to the hospital Ophthalmology Dept, so I tried to find a recommended Consultant and attend privately every 4-6 months - costly but you can't put a price on your eyesight.

I also have high eye pressure and get put on and off eye dropsfor that. The last lot stopped working, so will be prescribed a new one at the next appointment!

I've also had computerised photography of the back of the eyes at the optician - it's costs £10 but I think is well worth it to check the optic nerve in my case necessary to look for Glaucoma (can be caused by high eye pressure and also by steroids). Like you, I, too, was told that I have the beginnings of cataracts (another possible cause of the steroids).

I found your mention of the light sensitive lenses and glasses for driving at night most interesting, as I've complained for 2 years on the steroids of feeling sensitive to the brightness particularly at night; in fact, when my husband is driving at night I usually put sunglasses on! I will now pursue the special lenses and glasses - so, once again, this forum and you have proved most informative.

So a busy weeks for me coming up - ring the hospital on Monday and talk to the rheumatology nurse and hopefully arrange blood tests, and contact Eye Consultant to bring forward appointment.

Not very happy with the whole rheumatology/hospital thing at the moment as I feel 5 months is too long between appointments and the rheumatologist refused at my last appointment to give me a blood test when I reduced during that 5 months, informing me that I would have one just before I saw him again in May by which time I would have just reduced again, consequently I am now suffering. Goodness knows if he is trying to save the hospital money because he also refused a Bone Density Scan when I first went on the steroids (I'd never had one). He said that there was a 12 months waiting list anyway. My GP said the same, but when I suggested that I could perhaps pay for one he thought that was a good idea! I guess I'm not alone amongst us from what I've red on this forum in in feeling that there is a lack of care.

I've had my moan - sorry - perhaps I should try your brandy boost mentioned above!

MrsO

Mrs O

Boots do a 'heel' Dexa scan, not sure how much it costs.

Asdo do blood tests again not sure how much it costs.

I have not seen my Consultant Rheumatologist since last May. I have a blood test at my GPs surgery every month and am given the ESR and CRP figures over the telephone. If they have moved upwards, I then have a telephone conversation with my GP - saves his time and mine. We then decide to either hold or up the steroids. Some consultant rheumatologists do not believe in the ESR or CRP movement and say they can cloud the issue, they prefer to take how the patient feels together with the infrequent tests. Others like monthly or three monthly tests.

As, currently there is no known cause, cure or even agreement on treatment, apart from steroids and methotextrate. I realised, after one year into GCA that its a 'lucky dip' and that quite often the patients know more about the illnesses than the professionals.

We are currently battling with NICE to get Diagnostics procedures and guidelines issued throughout the country.

I would say to you - listen to your body - you know you better than anyone else. Google 'Tayside Support Group' - a website run by a support group in Scotland. Think about joining one of the existing support groups.

But keep in touch with this site - its a lifeline.

mrs k

Mrs K

Thanks, I'm grateful - will definitely keep in touch with this site as it's such a great place for learning from each other!

MrsO

Hi Mrs O

Just an update on our last notes. Following the last visit to my GP, I have been in agony. I went back because the pain is now in my temple (same side as the jaw pain) and also really bad pains behind my eye. Just wondered if you have experienced this. My GP wasn't in so I saw a different doctor who sent me to the opticians. They changed my lens on that side and I am now waiting to see a specialist which the GP said she will request urgently. I had managed to reduce the steroids to 15mg and she suggested putting it back to 20mg for now but its not yest had any effect. I think the eye pain is the worst part it feels like someone is trying to gouge my eye out. Looking like yet another visit to the doctors because painkillers aren't doing a thing. Any suggestions welcome!

Chisnal

Hello again and I'm so sorry to hear that you are still suffering following your last entry even though you have been to the GP.

Apart from being a sufferer of both PMR and GCA, I am, of course, not qualified to give advice other than to call on my own experience.

I don't wish to be alarmist but from what you have said about your eye and temple pain, I feel it is crucial that you see IMMEIDATELY either a qualified Eye Consultant at the hospital, or privately if necessary, or even see the Rheumatologist privately. I know it costs money but I feel you can't put a price on your eyesight.

At the outset of GCA, I had odd feelings around my right eye and, blurred vision and difficulty focusing and my rheumatology appointment came through within 5 days of the GP's urgent request, in the meantime the GP putting me on 40mgs of Prednisolone.

You didn't mention if your GP did blood tests for ESR and CRP to see what your inflammation levels were like.

When the inflammation levels go up in my blood test and the pains in my body worse, I also can experience a recurrence of disturbance around my right eye.

I am at present awaiting more blood test results tomorrow to see if I need to up the steroids yet again. The pain is very much up and down at the moment.

I'm sure you may hear from someone else following your latest entry with the same view and advice, but I do so hope that you get some urgent assistance.

Very best wishes, Chisnal.

MrsO

Chisnal

Go straight to A&E and tell the Triage Nurse what has happened and tell him/her you have been told you could be in danger of losing your sight. Ask him'her to look at the NHS site on the web for GCA and they will then see what it is all about.

Kick up a big stink if necessary.

I have instructions from my GP that if it is a weekend and I run into trouble and am not at home to go to any A&E in the country.

Even going privately you are going to be waiting at least 24 hours.

Its your eyesight that could be at stake here.

I just hope it is not - if you and we are wrong - so be it.

mrs UK

Hi again

I ended up going to the doctors Monday morning (23rd) who refered me to A & E. I got out on Friday afternoon. All the blood results were normal but the pain and vision problems still apparantly lead to belileve it is Temporal Arteritis. They did a biospy under local anesthetic (Not nice is it?) and I am waiting for the results. They seem to think that even if it comes back negative that it is highly likely that it is that because I have been on steriods for so long that they will in some way mask the results. I am now on 60mg steroid for the next six weeks. Oh what joy! I look like death warmed up, already full of bruises and every little thing is making me upset. Still as they say, things can only get better.

Thanks Mrs o and Mrs UK for you concern. I do hope things are going really well for everyone who has taken the time to give me such useful advise.