GCA and miserable day.

[christine2715]

Daughter drove me to Southend from Lewes, a two hour journey, to have a PET scan as I am now under Prof Das Gupta. Was feeling really ill as I had to reduce from 17 mg to 7 mg in two weeks to have the scan. At first I was feeling so much better which was strange as I have been ill for a year but when I got down to 8 mg was really ill. Difficult time with parking, traffic etc and could not get my special blood tests done, they couldnt do them in the morning and after they said it wasnt possible as I was radioactive. Will have to go to Brighton.

Then I will be taking a new drug and if that doesnt work in three months I am to try Tocicilbub - not sure I have spelt right.

On the way home my daughters clutch went on the M23 so 1 1/2 hours on the hard shoulder waiting for the AA. Got up at 6 am and not home until 8! So mega tired and miserable today. Sorry to moan on but I just needed feel sorry for myself. I hope everyone is ok. Best wishes

[TooSore]

Oh what a long, tiring day! Rest and more rest is the plan for today I hope. Take care and just focus on the thought that the results will make the day worthwhile. When do you start the new drug and what is it? Can you increase your prednisone today. Take care of yourself. Naps and tea

[christine2715 in reply to TooSore]

The drug is Mycophenolate - which I might be taking once I have had the scan results - have an appointment on April 20th - then I take that for 3 months and if that doesnt work I can take Tocilzumab. Does anyone know anything about Mycophenolate? What does it do? Am allowed to go back to 17 mg Pred now if I want to . Am trying 9 mg today to see if going up two helps.

[DorsetLady PMRGCAuk volunteer]

Oh dear,

As my late hubby would have said -Sod's law! As if the journey wasn't enough without all the additional hassle.

Give yourself some extra TLC today, you deserve it, and hopefully your next trip to Brighton will be less fraught.

Let's hope the new drug helps.

[christine2715 in reply to DorsetLady]

Many thanks DorsetLady - I agree with you. My Daughter hadn't even had any clutch problems. I feel sorry for her too as she has just had to pay £950 to get her cats bladder stones sorted! I did go halves with her to help. It never rains when it pours, on Friday my husband has surgery to repair a Macular hole in his eye so I will be most of the day in Brighton - am hoping I can get my bloods done at the same time.

[PMRpro Ambassador]

Tocilizumab - the new wonder drug for GCA. I imagine it's a case of a DMARD has to be tried and seen not to work before tocilizumab is allowed.

It never rains but it pours does it! The one day you'd really rather a car behaved it doesn't...

[christine2715 in reply to PMRpro]

I think you are right - I have to take Mycophenolate for three months first. I don't know anything about this drug.

[suzy1959 in reply to christine2715]

Hi Christine, I have just stopped taking Mycophenelate after 6 months as It wasn't helping. This is the third DMARD I have tried ( Methotrexate, Leflunomide) and it was just desperation on my part that made me try it! It is supposed to have fewer side effects than the other 2 and I think that was the case with me- I didn't notice much, except perhaps some more irritable moods and a bit more trouble sleeping at the beginning, but who knows if it was related.

[piglette]

Hi Christine, what a day, it never rains but it pours. I was unable to have some blood tests done at the hospital recently and was able to have them done somewhere else. I don't think it matters that much as the results all go on the computer and can be transmitted and viewed.

[christine2715 in reply to piglette]

Hello Piglette, I can get them done at Brighton but because I had to have the PET scan in Southend it was thought better to get them done there as the last lot they had only done some of them because they hadnt taken enough blood! Also we have problems round here having tests done out of area - they never seem to get back to the consultant! Cracks in the NHS ... !

[piglette in reply to christine2715]

It is not cracks in the NHS it is ruddy great chasms!

[paddyfield in reply to christine2715]

"problems round here having tests done out of area - they never seem to get back to the consultant! Cracks in the NHS ... !" Same ridiculous situation in Northamptonshire. Not much pint in being able to choose your hospital if the consultant cant get test results sent routinely.

[piglette in reply to paddyfield]

It is not just out of area, my GP cannot see any xrays I have had done even locally. If you go privately forget any information being transferred to your GP, as the private sector are not on NHS net! For some unknown reason if I see my rheumatologist as part of secondary NHS care, information has to be downloaded overnight to my GP computer system if they wish to see it and I have to tell them about it first so they know, as they don't seem to read any letters sent to them. Thank goodness they are not running an airline!

[paddyfield in reply to piglette]

My post has disappeared. Gist is there s hould be a comprehensive opt out system where all test results can be accessed by one and all. Whoops I think we are supposed to have that already - NOT!!

[PMRpro Ambassador in reply to paddyfield]

Probably because they employed third rate programmers instead of coughing up higher salaries for fewer people who knew what they were doing! It is a mega task for the whole of the UK after all. The region I live in in Italy oversees its own healthcare system and it's taking a lot of effort to set up a system for half a million people!

[christine2715 in reply to PMRpro]

I just cannot understand why they cannot just email info as an attachment or save as a disc and post it if thats not possible

[PMRpro Ambassador in reply to christine2715]

Security of patient data.

[piglette in reply to PMRpro]

There was something in the news yesterday that said NHS employees were now at the highest number ever. However they have increased the back room jobs, presumably such as computers and admin, and not doctors and nurses.

[Daisyroo]

Poor you Christine ..... what a day. I just picked up on your husbands mac hole op .... and when I am not battling with PMR I am usually at work at the macular society! I do advise you to contact them and ask their advice for his problem if you have not already done so. I hope to be back to work asap but no idea yet how this 'interesting' condition will pan out. What a bore it is .....

[Jackoh]

What a really difficult day for you. Hope if all goes smoothly tomorrow for you and your husband. Let us know how you get on with your new drug. Best wishes to you . Jackie x

[ipsidipsy]

Hi Christine 2715. So sorry to hear about your troubles with journey etc. I have noticed it does take it out of you if you do too much in 1 day

Can I ask, have you PMR or GCA and what made you go to see Dr. Dasgupta. I'm thinking of doing this myself as he seems to be the expert in GCA in the south.

[PMRpro Ambassador in reply to ipsidipsy]

Dr Rod Hughes in Chertsey is also outstanding - and a very lovely man to boot. Also superb re PMR.

[christine2715 in reply to ipsidipsy]

I have GCA and was told Das Gupta was the expert. Also he is involved with the drug trial Tozicilibub. i have made little progress in a year. So far Das Gupta has been really good.