hello lyn and I am so sorry to read of your latest news and another condition to have to deal with. as is usual with you, you have detailed it so clearly for all of us to follow and like others really appreciate that you have taken the time to do so. it is scary stuff and must be a very anxious time for you and hope the next few appointments with the various departments will see a plan that will relieve you of the discomfort and uncertainty that you suddenly have surrounding you.
the flaky interfaces that seem to exist between hospital departments and the gps should reinforce to all us patients that we really need to gen up so we can do as much as we can to assist the medical professionals to help us. my example of flaky interface is that I was with the orthopaedic department in the june with sore feet, diagnosed as plantar faciitis and by the end of the following month diagnosed with RA but not with a referral from the orthopods but I didn't have a clue at the time that there might have been a link - though you think they should have! I guess there are just too many permutations.
I'm sending you love and hugs and hope you are feeling more like your old self again very soon.
.....eve x

Gosh Lyn, that is a bit of a wait for something like this. I can imagine it must feel quite scary being so short of breath so very easily. I do hope that the heart pills will help this a bit more. Glad GP is good.
Guess they may do an angiogram or Trans-oesophageal echocardiogram where they get a very good picture of the heart. Whatever happens, I just hope it is soon for you.
7.5mg isnt much pred, what dose were you on before?
Second thoughts, please dont feel you have to answer this post, I know how exhausting being at the computer can be.
My thoughts are very much with you, take good care,Love Lizx

It must be very frightening Lyn-do hope you get some positive news and soon.

Good luck with all the tests Lyn. I'm glad the ball is rolling now and you are in good hands. Keep us posted when you have the energy to do so......but rest is more important. Best wishes from Naomi.

hi Lyn,

just wanted to add my very best wishes and hope that things start to improve for you soon .. you've been through more than enough.

you are in my thoughts.

take care,

Suzanne x

Hi Lyn

Hope things have been holding up reasonably well for you, I somehow feel not a lot has really progressed since your last post, however have you received any news about your appointment to see the cardiologist / results of tests carried out ? It all takes time as we all well know, just feels like you have been in limbo for so long now, it must see even longer for you !

Love Julia xx

Clearly I shouldn’t be saying I’ll be back next day when there’s every chance I might not be!

These are lessons I am learning very quickly as I try to deal with life on a day to day basis. I am a great one for lists and plans, everything arranged well in advance and all eventualities covered. Except now things seem to change on an hourly basis so it’s just as well I do not have to contend with any major arrangements in the near future! At the moment priorities lie with hospital appointments, GP visits and what seems like never ending blood tests. All a means to an end I guess but at the same time also very reassuring that I’m never too far from some attention if it’s needed.

Progress is remarkably slow, although any has to be better than none! My GP has a plan of action which involves gradual increases in my heart meds over alternating weeks with two weekly blood tests on top of my normal monthly RA monitoring. By the time I see the Cardiologist on 1 August I will be on the recommended dosage and they should by then know whether these meds are going to do the necessary to control the heart failure and improve the pumping function of the failing heart chambers. My GP has secured me an appointment with the nurse led Heart Failure Team on the 29th June. An early opportunity to get some questions answered hopefully. In the meantime I’m doing very little … I simply can’t. Even the least strenuous of tasks leaves me breathless so rest has to be the order of the day. The left side of the heart sends the oxygenated blood around the body so consequently there isn’t much getting round!

RA wise things remain quite settled although my right knee is full of fluid again and I’m waiting for a call back with an urgent consultant appt to get it aspirated and depomedrone injected. Still existing on 7.5mg prednisolone but no doubt the consultant will have some thoughts when I see her. Feel as though I’m on borrowed time as far as the RA is concerned and it’s probably just waiting for an opportunity to flare. I consider myself lucky that it’s remained calm this long really!

Liz, thank you for your thoughts about possible tests. I have looked up those you mention and they do seem like possibilities. My GP thinks a further scan may be done next week to see if anything has changed. I'm guessing the nurses will reassess and may decide what's needed before I see the consultant.

Paula, as regards liver congestion/ failure etc. You were correctly informed that numbers up in the 600/700 for ALT/AST readings represent serious problems. Fortunately mine didn’t reach those levels but were much higher than normal. AST is present in organs other than the liver, and in my case was present in the heart too and indicative of organ damage. One of the main concerns with the AST readings is that levels can quickly change and move a condition from congestion to failure. Failure of the liver alongside advanced heart failure and lung congestion can soon lead to multi organ failure so imperative it’s treated quickly. However, in your shoes, I would have been concerned about the rise in AST without the attendant problems and would probably have been looking to reduce some drugs until the toxicity cleared. I will have another read of your blog

So for now I’m getting photo albums up to date, reading lots of books, watching plenty of football matches and pondering whether I should undertake some further study come September! The decorating and house refurbishment remains exactly where I left it on the 14th May and looks like that’s how it will stay for the foreseeable future. I can’t even be bothered supervising ‘the men’!! Once they start … …. let’s not go there, think I'd rather leave it part done!!

Lyn xx

Lyn, thanks for your update, I see that there is a plan of action put in place, at least things are moving for you.

Thank you for replying about my ALT results. I recently spoke to one of the specialist nurses and told her that I have read about two people (you and I think it was Crazychick ..Shirley), who had similar readings to mine and had problems with their liver. She replied with a similar answer to yours, saying that probably they had other underlying conditions as well.

At the moment I have started on MTX, started on 15mg injections and the last one was 17.5mg. If you read my recent postings on my thread I have explained it all on there.

At least at the moment your RA is behaving itself, that in itself is a blessing.

See you are enjoying the football, husband at the moment is watching the England match, he keeps shouting at the TV and getting excited with it all. Lyn......Keep Calm!!!!!

After the football you will have the Olympics to look forward to, so at least the TV will keep you entertained.

Thinking of you.....Take Care

Paula xx

Gosh, you really have been through the mill lately. I'm so glad you are keeping us informed of your progress. I do think a lot about you and it makes what I'm going through seem simple in comparison. Thank goodness they are getting to the bottom of what's going on now and the experts are putting their minds to what treatments you might be given. I do hope the Mtx works well for your RA. I do find it helps my joints a lot. Best wishes Lyn, and I hope you are resting and treating yourself and getting thoroughly spoiled. You deserve it. X

Hi Lyn - I just want to say a big thank you and wish you well.

I'm new to the forum so I don't know you all very well yet, but I always spot your brilliant "Pain is inevitable, suffering is optional." - that strikes a chord with me, and I really value your comments, always relevant, informative and kind. I am so sorry that you've got all these extra health problems - it seems so unfair on top of the RA! But I really thank you for taking the time (and considerable effort) to write it all down so clearly because it certainly helps me. Your comments about not everything being due to the RA is especially noteworthy - after all we are human and are susceptible to the all the ailments that anybody can get. Your experience reminds me that I need to be very knowledgeable about all sorts of areas to enable the health care professionals to really give me the best care and sometimes I need to chivvy them along and keep reminding them. But like you I tend to underplay my symptoms and I need to learn how to be "honest" and "open" with them - the discussions on this forum certainly show me how important it is to be an "assertive patient".

So thank you and wish you well - Sylvia xx