GCA/PMR and driving

[Classicmike]

Anyone know about driving with GCA/PMR and do you have to inform DVLA

[Jan1961]

oh wow i just logged on here to ask the same thing before i call the DVLA as i have to go on a speed awareness course ! oops!

[PMRpro Ambassador in reply to Jan1961]

See my other reply!!

[PMRpro Ambassador]

If you look on the DVLA site it tells you what conditions and drugs require to be notified. I imagine that if you have visual problems with GCA you would need to do so. PMR doesn't need to be notified. I think you would need to tell them if you became diabetic as a result of pred treatment though. I would say your doctor should have told you - but my experiences with the consultant who said I had to tell DVLA and couldn't drive because of something else made me aware they haven't got a clue and in her case wasn't prepared to admit the fact! DVLA, on the other hand, were great!

DVLA are actually very good about helping - once you actually get through!

[Classicmike in reply to PMRpro]

Hi PMRpro So if you don,t have visual impairments and you are a non diabetic do you need to inform them?

[PMRandRA in reply to PMRpro]

The DVLA told me that type 2 Diabetes is not notifiable but type 1 and insulin reliant Diabetes is, It would also be good to inform your motor insurance company about it because they tend to be very quick to deny a claim if they believe anything has been withheld from them.

Oh, and don't forget travel insurance if/when needed. Better safe than sorry.

[DorsetLady PMRGCAuk volunteer]

Hi Classicmike,

So long as you can still read number plate at designated distance you are okay to drive (even with only one eye! once you have adjusted to it). As PMRPro says, if you develop diabetes then they need to be aware. You might also like to touch base with your insurance company just to make sure they have no problems. They shouldn't do, but best to be upfront with them just in case. DorsetLady

[mickt]

If you are insulin dependant diabetic you need to inform dvla,ive just had mine back for another 3 years which is the max they will give you with type 1 diabetic.If you have had a hypoglaecimic episode in the last year where you have needed help,then I think your licence would be under threat.Not sure about gca,i had bad double vis and was told you should not drive until 3 months after last epidode.

[PMRpro Ambassador]

Yes - being upfront with any of the agencies is essential: if you are driving without informing them of any relevant things you are likely to be driving uninsured. If anything serious were to result the consequences don't bear thinking about - but we had this discussion on another forum a couple of years ago where people said they were going to ignore the fact they had to inform DVLA of something. Informing DVLA is a different matter to them saying you can't drive - either way, you aren't stopped from driving unless there is a good reason.

[Annodomini]

I once knew someone blind in one eye who passed her test first time. Luckily it wasn't during he test that she went round a roundabout the wrong way - when I was accompanying her. So yes, even with visual impairment you can drive.

[Classicmike]

Thank you all for the combined wealth of knowledge found on this site I am very grateful to have a backup support team in dealing with the complexities of this illness and the questions it raises that I don,t always have answers for.

[Jan1961]

I can honestly say that i get more information on here than any health professional i have seen.. Maybe i am one of the unlucky ones and the people i see aren't clued up or not giving me info.. i never know what to ask as i don't know about the condition .. dealing with it for months and no one has said yep you have GCA/PMR they throw me on 60mg's pred along with everything else i am taking.. and can only say to me its Probable GCA and possibly PMR .but you're a bit young ....still waiting results of biopsy.. fed up with it all now

[PMRpro Ambassador in reply to Jan1961]

Now there's no need to show off how young you are! "bored now..." indeed

You get info here because we are specialists - in PMR and GCA! Don't ask me about RA or most other vasculitides - I know a fair bit but nothing like what I know about PMR and GCA. And healthcare professionals are permanently in a rush and see maybe 30 or 40 patients in a clinic - you lose track all too easily. I struggle with the forums sometimes and can't remember someone's history when they ask an out of context question and are relatively new - putting something on your profile can help a lot there.

I know, it's a pain - but the biopsy isn't 100% the answer either Jan so be prepared for that. It is positive in less than half of patients - but it doesn't mean you HAVEN'T got GCA if the biopsy is negative and the doctors may be sure enough from the clinical story to leave you on pred. If the biopsy is positive it is 100% sure you have got GCA - but sometimes they don't find the giant cells that give it its name: they can be patchy and skip bits so there aren't any, maybe the sample wasn't long enough, maybe you'd already been on high dose pred too long. And it is now being thought there may be a form of temporal arteritis that makes the blood supply to the optic nerve poor because of swelling that doesn't have giant cells but responds to pred.

Learn to look at it all as a journey of discovery! It will get better - we hope!

[mickt in reply to PMRpro]

Hi pmrpro your last paragraph about blood supply to optic nerve is what I've got wrong. I've had pred increased last week back to 30mg on 25 mg injection of methotrexate once weekly also .Consultant said he had reduced me to quickly he thought,he was disappointed id had a flare he is doing his best I said to him. He did ultrasound on temporal biopsy site and he said blood flowing but part of vessel wall thick.Im on clopiderol 150mg and aspirin 75mg daily for blood thinning. Had grey mosaic curtain in left eye the problematic one about 8 times lasting max of 1 minute ,so went to hospital immeadiatley.

[Cumbria in reply to Jan1961]

I was 54 when diagnosed with PMR and GCA in 2009. The best help I have found is pmrandgca.forum.co.uk although its from the North East support group people are on the forum from all over the world. I am aure lots of your concerns can be answered there. They even have a moan page as

We all have days where we need too good luck and take care of yourself. Deborah

[mickt in reply to Jan1961]

Hi jan I was told the same to young a year ago,all possibles and probable when you want someone to give you a diagnosis.They treat the symptoms and from what I can gather that is the way they go about it.Ive gca pmr same as you.Go on vasculitis co.uk ,its very informative about gca.Also pmrgcane.co.uk is a forum with loads of helpful people on ,mostly women with pmrgca .Always plenty of info and chat on illness it helped me cope when I was at your stage of things.Good luck and keep positive it helps.

[Jan1961]

I can't believe how helpful people here are... I have to say I am in a bit of shock reading the replies... Someone mentioned vasculitis? Why has no doc mentioned this too me! I had a heart attack 2 years ago and take meds on top of pred... They haven't referred me again to heart consultant to get checked over ... When I see my gp he stops to look GCA up on internet! I am sorry I have hi-jacked the original post !

[Hidden]

Jan 1061

Your GP should have referred you to Secondary Care immediately he suspected GCA. You need a referral to either an Opthamologist or Rheumatologist (preferable one who has GCA & PMR listed on his/her hospital profile. You should also ask to see your Cardiac guy at the same time. Consultants can no longer refer you direct to another Consultant since this Government introduced GP commissioning. The 1st Consultant has to write to your GP recommending you to see another Consultant which leads to either delay or your GP deciding its not necessary as he holds the purse strings.

Vasculitis Uk is very information about GCA (which is the commonest form of Vasculitis) but PMR & GCA, both in England, Wales & NI, PMR GCA Scotland and PMR&GCA North East Support are dedicated to those two long term illnesses. They also run Support Groups nationwide. Visit their websites for up to date information.

[Hidden]

mick t

You wrote: "paragraph about blood supply to optic nerve is what I've got wrong" That is known Giant Cell Arteritis (GCA) sometimes known as Temporal Arteritis (as this is where it is most commonly found in the Temporal Lobe but in reality is a misnomer).

It is known as Giant Cell Arteritis as it can and does affect other arteries and can present in other arteries.

You must have read the BSR Guidelines on Diagnosis and Treatment of GCA on both PMR GCA National website and the North East website and the ongoing treatment which explains subsequent treatment.

[mickt in reply to Hidden]

Hi smoky yes ive gca and I realise and have knowledge of symptoms and treatment .I meant my eyesight has been under threat with gca,Ive had negative temporal biopsy last june ,but illness has been treated with pred .I had a flare last week eyesight related ,pred has been raised again for protection of eyesight .Its a strange illness which has caused me to be medically retired from work.Pmr gca are just 2 things ive going on .Click on my name ,all will be revealed .Thank you for your concern.

[patdencass]

My Rheumy was the one who said I was OK to drive - a big phew!!!

I've been reading the forum & catching up - while I could stay awake. Well that's an exaggeration as I fell asleep within about 5 mins It's been very interesting & informative, and although I hate to think others are suffering it's reassuring to hear from people who understand. My PMR was diagnosed Sept last year & GCA Jan this year. Have gone from 20mg Pred, up to 40 -50 & now back to 20. The comments about GCA highlight how mysterious this condition is. When I asked my Rheumy if I def had it, he shrugged his shoulders. The headaches & jaw pain are easily managable now. Although the original PMR was the pain in my upper body was the most awful I had known, this is well under control. I now have pains in my back & my legs are painful & weak. My legs are swollen, I have bruises on my arms and I am sooooo tired. I cannot sit down without falling asleep. I can't get to the bottom of whether the pains are due to an earlier back problem, PMR or the medication. I get so many differing opinions. What a confusing condition we have. I've had pain in my ear lobe, a tooth problem, snoring etc but none could be directly accountable to PMR/GCA. Maybe - maybe not!!! Ive probably just bored or confused you all more but it's made me feel better writing it all down. I'm going out to listen to a band tonight - hope they are loud to keep me awake lol. Wish me well. Good wishes to you all

Pat Cass x

[Classicmike]

No visual problems and had a recent blood test no diabetes PHEW just insured my new classic car today and decided not mention it !!!! Hope I did the right thing

[Jan1961]

Oh shit! I really don't want this thing!! It's bloody scary when u don't know who to turn to as most don't know what it's about! Sorry for swearing

[patdencass]

Swearing can help Jan The mysteries keep coming but not all days are bad. My younger brother is battling cancer & in a strange way that helps me to keep focused as I hang on to the fact that most people do get better eventually from PMR/GCA. Take care x

[PMRpro Ambassador]

Yes - however you want to look at it, PMR may be a bit of handicap but doesn't kill. GCA cared for properly doesn't either. It isn't cancer - and we've been there and got that t-shirt in this family too. It didn't kill - though it very nearly did.

Swearing - lots of us have found we have developed a whole new vocabulary and we think it is part of the PMR/GCA I certainly swear more when I'm having a flare!

[Whittlesey]

Hi ClassicMike, My mother had GCA, diagnosed at age 70. Once the prednisone started to work, she began to drive again. She lives in Connecticut, which is more suburban, I live in NYC and stopped driving -- it was easier and much more economical to take the subway and buses and taxi's. She passed away when she was 74 but once her vision was ok, again, she started to drive and continued. I'm in the U.S. and she never notified the Department of Motor Vehicles. I think she got one renewal on her license without any problems. And I was in the car with her several times. She drove slower than previously, but she was a fine driver. best, Whittlesey

[Classicmike]

Hi Whittlesey, thanks for your reply, my question was really about getting car insurance. l am so glad that your mother still drives now that the prednisolone has kicked in. Thanks for your reply