What next?

[Janann25]

Following my first consultation with the rheumatologist last Monday, I received an appointment from the hospital to go today for a scan followed by a biopsy. I had the scan done - it wasn't a diagnostic scan, it was merely to mark where the surgeon would need to make the incision - and then went to the surgery department for the biopsy. However, almost the first words the surgeon made to me were to the affect that he didn't know why he had been asked to do this!! He explained that, because I have already been taking steroids for over two months - initially 15mg, then 30mg following my consultation and then 40mg, this would affect any results. He also outlined the possible risks of the biopsy and that the decision as to whether to have it done could only be mine. He felt very strongly that this should have already been explained to me and that he couldn't ask me to sign the consent form until I understood all the implications. It was such a big decision for me to make - and I actually got quite upset - so he said he would write to the rheumatologist explaining the circumstances and that I should contact the rheumatologist's secretary to arrange a chat with her. I have to admit I shall leave that until tomorrow because I haven't got the strength to do it today.

I've spent the last couple of months trying to come to terms with this illness but now feel I just want to give up - a combination of being frightened and feeling very isolated. I've no idea whether anyone here has experienced something similar but would be very grateful for any advice.

So sorry to sound so pathetic 😢

Jan

[Hidden]

You don't sound pathetic at all Jan. It's very scary but at least surgeon have you information. From what I have read on this group he was probably right to advise you but that doesn't make it any easier. It's very easy to slip into isolation with this type of condition simply because you feel so rubbish most of the time and the brain doesn't process information. Doesn't help when gp doesn't have experience to deal with it. I hope you start to feel a bit better. Feet up and rest until you feel able to address it I would think.😐

[Janann25 in reply to Hidden]

Thank you so much for your reply - I think I feel the sense of isolation even more because I lost my husband last year and I miss his support so much. Anyway,I'm going to ignore my new sensible eating plan this evening and indulge in an M&S ready meal together with a large glass of red wine!!

[Hidden in reply to Janann25]

Am so sorry about your loss. It's a lots to deal with in such a short time..an m and s treat and wine sounds like a good way to wind the day down. Take care.

Another Jan!

[JanetRosslyn in reply to Hidden]

You're not alone. All the Jans sticking together... I'm having a ready meal tonight too, the first one in about a year, and I'm going to enjoy it! You do too.

Yet another Jan x

[Janann25 in reply to JanetRosslyn]

Hi another Jan 👋 Meal is stil cooking but the large glass of wine is going down a treat!!

Jan x

[DorsetLady PMRGCAuk volunteer in reply to Janann25]

Hi Janann,

I lost my husband 16 months after diagnosis, so I know how exactly how you feel, and it is true over time it does get better, but as I said in a post the other day it's the little things as much as the big things you shared which is the most difficult to cope with.

I'm on holiday with my son and his family at the moment, and I must admit he's been fantastic - mind his dad did tell him on the day he died to look after me - which he has, but lovely as it is, it's not quite the same. But you have to move on, difficult though it might be in the early days. I'm fortunate I know - I have 2 lovely kids who have their father's sense of the ridiculous and 4 great grandkids all of whom I love dearly. But that's not to say the last 4 years have been easy, they haven't, but I know my husband wouldn't want me not to enjoy life - in fact he specifically told me to!

Take care.

P.s. Had a glass of sparkling rose in the pool at 5.30 this evening! Very decadent!

[Janann25 in reply to DorsetLady]

Thank you for your words. You are indeed blessed with your family - unfortunately we weren't fortunate to have this so I am definitely "on my own" . On days like today I feel this even more but on good days I remind myself that I still have a lot to be thankful for. And yes, I also enjoyed my glass of wine - just the one😉 - at about the same time as you! Cheers! 🍷

Jan

[Elaine-W in reply to Janann25]

Dear Jannan25

Sending you an online hug 🌸. Of course you feel overwhelmed and scared. I certainly did when this truck hit me (GCA). Things will become clearer as you read posts on here. You will get lots of support and more than a few laughs too. Get to know the characters and glean bits and bobs about our lives. A bit like a soap opera. Seriously though stick with us and we will get through this together xx take care

[AMG38]

Sorry to hear you have lost your husband, I know how you feel as I developed pmr 18 months after I lost my husband. Others will be along shortly to give you advice in the meantime know you are not alone and things WILL get better. Enjoy your meal and wine and try to relax. Praying for you

[Janann25 in reply to AMG38]

Thank you so much for your reply - it really helps to know I'm not entirely alone.

[PMRpro Ambassador]

I'd certainly make very clear to my GP and the rheumy how unimpressed I am about this - if they want a biopsy it should be done quickly and higher doses of pred only given for a short time - it would be wrong to withhold pred if GCA is suspected though. The rheumy MUST have known you had been on pred for a long time and should also be aware of the fact that the pred would have messed up the likelihood of a meaningful result.

And you don't sound at all pathetic - you have a GP who should have sorted out a rheumy consultancy immediately he suspected GCA - that means a phone call. And a rheumy who should know better. We have to trust the doctors - and when they are silly it really doesn't help us!

[Janann25 in reply to PMRpro]

Thank you for your reply. I now have to find the energy and incentive to "take on" the consultant's secretary tomorrow, to try to get some answers. I'm just SO tired.

Jan

[PMRpro Ambassador in reply to Janann25]

Unfortunately you don't know the questions to ask when such things are sprung on you. That comes later.

The first one has to be: "will the result change how you treat me?". While having a positive result is 100% certainty, having a negative result doesn't mean you don't have GCA - it means they didn't find what they were looking for and there are a lot of reasons for that. Though a supposedly top UK GCA expert told someone I know "the biopsy is negative so that means you don't have GCA". She was still very unwell and demanded more investigations - and a PET-CT showed she had extensive large vessel vasculitis (GCA is one) affecting her aorta. GCA doesn't only affect the temporal artery - but you would think it does to listen to some doctors. This particular patient was concerned about cardiac disease and asked for monitoring which was denied. She subsequently had a heart attack - and since has switched to a vasculitis specialist in London. Who was slightly taken aback at her treament...

We have to be our own advocates - but we haven't had the advantage of the medical training. It isn't good enough but I don't know how you can change it.

[SheffieldJane]

Gosh how frightening and upsetting, you should not have been put in this impossible situation! I would be very angry in your shoes and tempted to go to the complaints authority.There is nothing pathetic about you, what is pathetic is the lack of a decent coherent approach to these diseases.

I just read your further post and can imagine how acutely you miss your partner in life when issues like this arise. Stick with us here, you will feel less alone. 🌹

[Janann25 in reply to SheffieldJane]

Thank you - even within the last few hours since I wrote my post, I've realised yet again how great this forum is, not just for advice but for moral support - I appreciate it so much x

[Mai45]

Jan, I've come late to this thread and am not qualified to give you any opinion on the medical front, but you are definitely not pathetic!

I lost my husband last year and PMR swooped in just over 3 months later. It takes a lot of time to adjust, and it's not easy. Every day is different and on some M & S and a glass of wine can be the perfect antidote. Keep going using your gut feeling, the odd glass of wine and the advice of the experienced people on here and you'll get there. Good luck x

[Janann25 in reply to Mai45]

Thank you so much for your words- yes, it sometimes seems to get harder the longer I'm on my own but it helps so much when someone like yourself takes the time to write - thank you

[Patience_1]

Hello Jan, I am so sorry to hear about the inept treatment you've had so far, and I know I would have been absolutely flummoxed about how to proceed. Thank goodness you were able to take a step back to have a good think. I can only try to imagine how scary it must be to be on your own with this condition and having to take such decisions - though I would say that, even when we are lucky enough to have the support of friends/partners, it's only fellow sufferers who can truly understand what we are going through. For me, this forum has provided so much helpful information so that I can manage the pmr better and ask the right questions of the medics, and I hope and trust you too will find a good deal of comfort here.

Don't feel pathetic when you're not managing too well. Be kind to yourself - and remember that YOU are the expert when it comes to knowing your own body and its reactions.

Best wishes

[Janann25 in reply to Patience_1]

Thank you so much - the support on this forum is just wonderful

Jan x

[CT-5012 in reply to Janann25]

Hi Janann,

Have you looked on the PMRGCAuk web site? There may be a support group near you which you could contact?

You are not in the least bit pathetic and certainly not alone.

Hope you are beginning to feel much better very soon.

[Janann25 in reply to CT-5012]

Yes, I had a look for a support group but the nearest one to me is a good hour's drive away. Because I've only just starting to drive again after my double vision issues, I don't really feel up to the drive at the moment. But it's certainly something to bear in mind. Thank you.

Jan

[CT-5012 in reply to Janann25]

Might be worth contacting them as they usually have a newsletter. I am too far from my group at the moment but enjoy hearing their news.

[Janann25 in reply to CT-5012]

A good idea. I'll try contacting them. Thank you for the suggestion

Jan

[PMRpro Ambassador in reply to Janann25]

Sometimes it is worth putting up a post and asking if anyone lives nearer to you - and possibly they could come to you and meet for coffee at a local cafe if you don't feel open to having someone come to your home. It doesn't have to be a big official meeting - just a chat, sharing problems, helps.

But the forums were conceived for the people who weren't near enough a group for it to be practical. The NE charity group forum was the idea of a lady living in France!

[Ladybird25]

As others have said, we're all here to support each other and keep each other going through the difficult times. I'm so sorry you are on your own, which must make your path so much more lonely and difficult. Don't give up - you'll see from previous posts that others have been where you are right now and they have come through it. The combination of the Pred and the condition can make you feel low with a tendency to get more upset and emotional than previously, especially if you have to "take people on"!

Don't be surprised if you feel overwhelmed sometimes, especially as it is still very early days since you lost your husband, but as you say, an M&S ready meal and glass of wine can often help to soothe things a little.

[Janann25 in reply to Ladybird25]

What a lovely reply - thank you so much! I still find it hard to believe just how hard this illness has hit me, both physically and emotionally but I'm assured by my friends that I'm stronger than I realise so I'm sure I'll be fine. In any case, my lovely husband would be so cross with me if I didn't keep going!!

Jan

[Ladybird25 in reply to Janann25]

I agree, it is a shock when something like this hits you, especially if it is virtually overnight and you've already been through so much. I'm so pleased to hear that you have supportive friends who recognise your strength.

I'm also in the process of tackling the rheumatology secretaries as I want copies of my blood tests and investigations. I popped into the clinic yesterday, hoping to fast track my request, but of course there's always red tape and warning bells, so I said I'd pop along to see the secretaries myself (more warning bells!!), and I was told that the secretaries don't see patients face to face... Working in a hospital myself, it's taken time to come to terms with being on the "other side of the fence".

Your lovely husband would be so proud of you now! Keep up the fight!