New with Questions

[Rowboat]

Hi,

Very glad to have found this site. I am in Australia, female and 55.

I was admitted to hospital about 18 months ago for over 2 weeks with a severe one sided headache, noise and light sensitivity. After lots of tests scans, mri, blood and whatever else I was released with an undiagnosed headache. While I was in hospital nothing was helping the pain. The pain was so bad I could not sleep. Finally I had a 2-3 day Ketamine infusion and this actually worked and I was released.

Over the next 18 months I gradually became sicker and sicker. My GP ran a lot of tests and sent me to a lot of specialists. I got 1 diagnosis which is a small mass in my pancreas, this is just being kept under surveillance.

I suffer from sero-negative inflammatory arthritis which I take Imuran (azathioprene)

Up unil January this year I was also on Jurnista ( slow release hydromorphone ) 24mgs and 6 Endone a day for pain.

During my time in hospital 18 months ago we discussed the fact that with me being on high dose pain medication that it was hard to give me adequate pain relief. January this year I started reducing all pain medications , it has been a tough ride.

I am extremely proud of myself though because up until about 2 months ago my Jurnista was down to 4mg a day nd endone to 2 tablets a few times a week.

What led to Temporal arteritis diagnosis.

Symptoms --- utter exhaustion, I could easily sleep 18 hours a day.

--- no physical energy, to cook dinner was a major chllenge

--- drenching night sweats

--- waking at around 3am with a headache

--- waking feeling like I had a bruise on my head like I had banged it on

something during the night.

--- after a few weeks of waking with headaches, all over severe scalp

--- blurry vision

--- weight loss, no appetite

Next --- To cut a long story short, I was diagnosed with Temporal Arteritis about 7 weeks ago. I was put on 50mg Pred 5 days before a positve biopsy on my right temporal artery was positive for possibly treated Temporal Arteritis Remember I was on the Imuran which is an immune suppressant. ( I don't have the exact wording of the biopsy in front of me as we are away visiting our grandchildren

The prednisone has been like a miracle after 2-3 days scalp was a lot better, head was a lot better, energy was great, mood was great and I finally felt like eating. My eyes can still be blurry at times but after having them checked I have not lost any sight the blurriness is the prednisone.

So 7 weeks ago admitted to hospital by ambulance, 2 weeks later released. Saw a specialist Neurologist. His plan is starting tomorrow to wean the pred to 45mg going down 5mg I think it is every 2 weeks. I forgot to say my ESR and CRP are normal but they always have been even with the inflammatory arthritis, so the specialist said we will have to go on symptoms.

After a few weeks on the 50mgs pred my headaches started worsening again. Just over a week ago I increased the prednisone to 75mg for 3 days. After 2 days headaches were much better. 4 days after going back on to the 50mgs of pred my headaches are terrible pretty much constant. I am supposed to reduce to 45mgs of pred tomorrow.

The doctors where I live do not know a lot about TA and remember I am away at the moment. I will arrange to see a GP tomorrow remember we are away from home. I have no idea what they will say but I know in my own body the prednisone needs to go up not down. Any help or advice would be greatly appreciated. Thanks

[piglette]

Hi Rowboat, you really do seem to have had a rough time. If you have headaches at 50mg I certainly would not have thought it a good idea to reduce any more. In fact it sounds like you should increase to a level to get the pain under control again. Good luck.

[DorsetLady PMRGCAuk volunteer]

Hi Rowboat,

What a time you've had, my sympathies to you.

You need to be on the initial dose long enough to get the built-up inflammation properly under control - for example, I was on 80mg for 2 weeks, then reduced to 60mg for a month. Continued reducing on a monthly basis

I would say this has not happened in your case - initially not given quite enough - although you would have got relief straight away on 50mg - but not enough to also control the substances that cause the inflammation that your body produces every day. If you don't get the basic inflammation under control, then each day just adds more to it (hope that makes sense).

Obviously the increase to 75mg worked, but you needed to be on it for longer than 3 days. So going back down to 50mg so quickly has caused you problems again.

I can't tell you what dose you should be on, but only suggest you need to find the level that controls the inflammation whether that be 75mg or could be slightly less. Stay at that dose for at least a week, two would be better, and if okay, then reduce. But not if you still have symptoms!

The fact that your bloods levels are not raised is not that unusual, many are the same as you.

Suggest when you see GP, suggest to him/her you increase steroids and get stable! If you are still having symptoms, your sight is still at risk - emphasise that point to him.

I know many specialists recommend reducing every 2 weeks, but I think early days, you need to be a bit more conservative - certainly until you know your own body/symptoms etc.

Please keep us informed of your progress, and good luck.

[jinasc]

This might seem a bit odd, but with all that is going on - hang on to one thing, your eyesight is precious. I would not be reducing your current dose from 50mg, I started on 60mg and it took just over 7 months to reduce down to 20mg. That caused my first flare, so back up to 40mg and a very slow reduction, no more than 10% at a time. I was totally symptom free within 6 hours of taking my first dose of 60mg. You do not seem to be free at 50mg. However bear in my we are all different. ESR & CRP sometimes never move up or down at all, so that is not all that unusual.

Go to this website and read up on the BSR Guidelines on the Diagnosis and Treatment of GCA www-pmr-gca-northeast.org.uk and then click on Useful Medical Information. You can, download them if you want to read them off screen.

Reading your post and, most important for you to know, I am not in anyway a medically trained person just someone who had GCA for 5 years and now coming up to 7th.

I think you might need to ask your medics to investigate Tocilzumab or Actemra (this has just come through some clinical trials and has been partially for use by the Federal Drug Agency : this is the link to the official website: fda.gov/newsevents/newsroom....

Here, in the UK , it is awaiting clearance from NICE for use in GCA. But it is licensed for RA and so some Consultants have been using it in special cases. It is expensive and even when licensed I do not think it will be in common use, but mainly for complicated cases.

It does not take away the need for Pred, but seems to be useful as a steroid sparing agent, which means less pred and in the clinical trials some patients GCA went into remission sooner. It is not a cure, there is no cure at the present time. Once they find the cause that will follow.

I hope this long reply helps and wish you well.

I also agree with DorsetLady - reduction too quick.

[Rowboat]

Thank you all for your replies. You have given me some good information and a little bit more understanding of how TA works. No i won't be reducing and if the GP here is no help I will try and get on to my one at home. I am with my 1 and 3 year old grandchildren for 2 weeks and as I only see them a few times a year I would like to feel as well as possible. Right now my head is getting worse each day. Thank you so much again.

[PMRpro Ambassador]

Nothing to add to DorsetLady and jinasc's comments.

Except to ask: Why are you under a neurologist? Especially one who doesn't seem totally au fait with GCA - you should not reduce until the symptoms are fully controlled. Your blood markers are irrelevant - you have a positive biopsy diagnosis which cannot be argued with and so symptoms are trumps.

[Rowboat in reply to PMRpro]

I live in a regional area of NSW Australia. My Gp is very upset with herself that she did not pick this up earlier. My rheumatologist visits monthly she is very brusque and only believed I had TA once she read the biopsy report and then said see you in 6 months. So really where I am there is no one with the knowledge to be of a great help. If need be we can travel to one of the cities but I think if my GP and myself learn together we will get there

[CT-5012 in reply to Rowboat]

Hi Rowboat,

Nothing to add to the previous comments except to say give your GP a copy of the download on your next visit. There is also a book by Kate Gilbert called Polymyalgia Rheumatica and Giant Cell Arteritis available on Amazon which you and your GP might find useful. All good wishes, enjoy your time with your grandchildren. 😊

[Rabbit1951 in reply to Rowboat]

Hi Rowboat, so sorry to hear of your pain and issues with PMR

I also live in Australia, Maroochydore Qld. I think Kate Gilbert's book is amazing and follow her advice. It is an unknown disease to many doctors. Take care and hope you can lower your medication very soon xx

[Hidden in reply to Rowboat]

Hi Rowboat,

I also live in regional NSW, but as that covers a huge area l could be many kms away. Dubbo is my hometown.

I have not had a positive diagnosis, it is coming up 1 year since I was started on preds for the condition, which has been a big help but I have found headaches will return if I'm doing too much especially where grandchildren are concerned. The bending over to them and the lifting all adds up.

Merryl

[maria40 in reply to Rowboat]

I found a neurologist more helpful and well informed about GCA than either of the rheumatologists I had seen when I was suffering a flare.

[Rimmy in reply to Rowboat]

Hi Rowboat - you have certainly been 'sailing' in very stormy weather !!

I am also in a regional area of Australia - in the West though - and I for one have found having a good GP who listens and is prepared to learn about PMR/GCA is a pretty good way of handling this/these condition(s). You may read on this and other forums that some specialists are not necessarily or always easy to work with (not all of course) as they sometimes have fixed ideas about certain things and huge 'blind spots' in important areas and many of us have done quite well with GP managed and consultative treatment.

I was unable to have a biopsy as had Prednisone for PMR first - then developed GCA symptoms later - but as Dorset Lady and others suggest it is vital to initially get that inflammation down (my markers never rose much either) with high doses and then taper gradually. Any pressure to speed the process up will likely be counterproductive if you do this too quickly. There are lots of great discussions you can search on here about tapering etc - which I found very useful when trying to educate myself about managing this condition. I am now down to 17mg of Pred after 8 months and feeling fine (with limited side effects) most of the time.

I hope you feel some further relief very soon and can enjoy your grandies !!

Best wishes

Rimmy

[PMRpro Ambassador in reply to Rowboat]

Has your GP seen this paper:

rcpe.ac.uk/sites/default/fi...

it was written to assist GPs diagnose and manage their PMR/GCA patients better.

Your rheumy is disgusting - and should be complained about. That is no way to treat a GCA patient. I have no doubt she is embarrassed at not having been correct in her own assessment.

[sondya]

Poor treatment! It could have been nastier for you, Rowboat! Fortunately, vascular disorders are well known in NZ. Online material (overviews written for medical practitioners) should have been researched by your GP. I hope she's fully acquainted with GCA now and you are being monitored by a rheumatologist.

[Rowboat]

Hi guys, Thanks again for the replies. I live in Wagga Wagga NSW. We are currently at Caloundra Qld for another 12 days or so. The GP i saw today was useless. She was very excited that i had a positive biopsy as i am too ' young '. She then crapped on about how I need to increase my imuran instead of the pred. Basically refused to increase the dose as according to what she then searched and found on the computer said I was only allowed a maximum dose of .75mg a kilo and i am 52 kilos so i am already on too much. (she did say do not decrease it and come back in a week )

Nodded agreed left. Tried my Gp in Wagga not in today but i can talk to one tomorrow. i then took another 10mg of prednisone bringing it to 60mg a day and will ring my GP tomorrow.

Thanks to all the info you people have given me I found that the .75mg is the MINIUM dose I should be on.

My head now is easy a 8-9 out of 10. If I didn't want to spend the time with my daughters family I would go to hospital tonight. So thank you again.

I think my GP in wagga and I will sort this out together I just want the pain gone.

[DorsetLady PMRGCAuk volunteer in reply to Rowboat]

Hi again Rowboat,

Unfortunately the pain won't go until you are on the correct amount of Pred that is capable of controlling your inflammation. Simple as that!

When you get back home have a look at my post - "info for new patients" just tap on my picture and it gives a list of posts etc. Can't give you a link at present - on phone!

Take care

[Rowboat]

Thanks again everyone. And thank you DorsetLady for your pinned information.

Been on the 60 now for 3 days, the headache are heaps better not gone but I can function. I am waking around 4am each day with a slightly worse headache though.

I rang my normal GP at home yesterday and she amited that she did not really know what to advise me ( she is also quite unwell at the moment ), she is concerned about the amount of time I have been on high dose pred. She agreed to let me stay on the 60 with a possible withdrawal to 55mg in a few days. I explained to her that it may be possible by titrating the Imuran we may be able to lower the pred that way. I said i would see her when I got back and she has asked me to also book into the neurologist at the same time. I told her we both have a learning proccess n front of us lol.

Talk later, I am so glad you are all here ( not sick would be better ) Rowboat

[PMRpro Ambassador in reply to Rowboat]

"she is concerned about the amount of time I have been on high dose pred"

That is because your doctors have been messing about. Had they not reduced as they have you would probably been OK by now but if you let flares in this is what happens.

It doesn't matter how long you are at high doses, what matters is that the symptoms are properly under control. Because the alternative is the risk of permanent loss of vision. And there is a lady on the forum this week whose friend had that happen due to dilatory medical care. A bit too much is far preferable to a bit too little.