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Posts Tagged ‘GP’

After emailing my Rheumatologist with an update yesterday, he replied to say that the referral to start the Stem Cell Therapy and Bone Marrow Transplant procedure had gone through.

Yikes. That conversation was real then.

I’m not commited to anything at this point, nor am I even close to making a decision about it; I have simply agreed to hear about what the procedure entails as a treatment option for Still’s Disease.  It has been agreed that we have exhausted all other options and the medications are just not working for me. There was a suggestion that maybe I could try a combination of biologics, which is unchartered territory but perhaps less risky than the SC/BMT. I need to revisit this idea with him at some point as I forgot to ask about it during our last conversation; the focus becoming SC/BMT.

There is only one hospital in the North of England that carries out the procedure and that is in Sheffield, about 90 miles away from home. That’s going to make it tough spending any long amount of time there. The funny thing is, that the only Haematologist to carry out the procedure also happens to be my Rheumatologist’s brother, which makes me feel I will be in safe hands. There shouldn’t be any communication issues between the two at least!

The first step is to see a Rheumatologist called Dr Akil at Sheffield Hospital. My Rheumy thinks it’ll be about four weeks before I get an appointment, but I wonder if even that is optimistic. It doesn’t sound very long and I’m kinda nervous about seeing a new doctor after all these years. I’m wondering if he will have access to my huge volume of notes, or if he will want to do some tests and investigations himself.

I was also sent some information about the procedure, although it is so rare that he hasn’t been able to find any patient-based info. Instead, it is a 21 page article full of medical jargon. I couldn’t face reading it straight away, it was enough to have it and realise that all this is very real. Today though, I decided there was no point sticking my head in the sand and that I needed to face it head on. It is going to be a massive decision and so I’m going to need as much information as possible to make it properly, plus enough time to process and take it all in and to address any questions I have about it all. Better to start now then.

And start I did, but after two and a half hours of reading I am only six pages in and have decided to leave it there for the day. Because I want to fully understand what’s in front of me, I’m constantly checking up on word meanings and acronyms and making notes in a separate document. It’s like being at school again, which would be great if it wasn’t such a personally daunting subject. My GP, (who popped round earlier to see how I am getting on since leaving hospital), has kindly offered to interpret anything I don’t understand though at least.

So what have I learnt so far?

  • Only 3000 of these procedures have been carried out for people with autoimmune disease since 1995 – worldwide; about 175 a year.
  • It will be an ‘Autologous’ Stem Cell Transplant, which means harvesting and replacing my own cells.
  • Remission is possible, both longterm and temporary; if temporary, returning symptoms tend to be easier to treat.
  • It is also possible that there will be no change and there is, of course, risk of death.
  • With Still’s Disease, the main risk of death comes from Macrophage Activation Syndrome, which can occur at either stage of the procedure. This is something I have already suffered from, I discovered recently.
  • My Still’s medication would be stopped as early as possible and I would have to rely on Steroids to prevent any further flaring.
  • I would need chemotherapy – I guess that might seem obvious but seeing it in writing makes it real.

And that’s about as far as I’ve got really, wading through all the medical jargon. I’ll read some more tomorrow and keep posting about it here. Since it is such a rare procedure, I think it is a good idea to keep a record of it for others that may need it in the future, even if I don’t go the whole way. Because it doesn’t just stop at understanding the procedure itself, or even coming to terms with the risks – it’s the whole impact on my life and future, the future I share with my fiance and any plans that we might have to start a family etc.

So much to think about,

L

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I went to see my GP earlier this morning because this neck and back pain has been getting me down and I’ve finally had enough. He examined both my neck and back quite thoroughly, asking to me to try and move this way, that way, forwards and backwards… while he felt the problem areas. Almost immediately he told me that the muscles from my neck down to my lower back have all gone into spasm, probably to protect itself from some other problem.

Finding out what that problem is will be difficult until the spasms ease off and so he has prescribed me a low dose of Diazepam to work as a muscle relaxant. Once I notice some improvement I am to arrange to see him again to reassess the situation; he thinks it could be either common neck pain from a trapped nerve, disc problems or joint damage.  I’m very young to have disc problems or joint damage in my neck, but with the Still’s Disease you never know; I’m hoping it is the common neck pain as that is easiest to treat.

I was slightly worried about taking Diazepam, it is a drug I’ve heard of before and for some reason it has negative connotations to me. But I’ve had two doses so far and although I feel a bit dozy, it’s not too bad and I’m pretty sure I’ve noticed some relief already so will be worth it in the long run.  He also gave me some simple neck exercises that I can try once it does start to loosen up again, to prevent it from seizing up.

I gave him the copy of my recent blood tests and he too is confused by them. My inflammatory markers are all reduced and yet he said it is obvious I am still having joint involvement – swelling around knee and elbow plus the pain in my shoulder and hip. The Tocilizumab’s main mechanism involves ‘mopping up’ excess CRP so my results correspond with that, but something else is obviously still causing this joint pain… unless they’re just slow to catch up.

Time will tell anyway; I feel positive that this is the one and that things are going to start to turn around, even if slowly at first.

L

Ps, To follow on from yesterday; the coldsores haven’t spread any further so I am to continue with the Zovirax and get in touch with him for Aciclovir tablets if it does get any worse.

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This time last week I was preparing to make my great escape from the hospital.  Thankfully, I haven’t been any worse since discharging myself, or for not actually receiving the Blood Transfusion I went in for; in fact, if anything, I’ve been on the better side.

I know this is because of two main things:

  1. I increased my Prednisolone back to 20mg after the hospital stay, so terrified was I of needing to go back! I should mention that my Rheumy gives me permission to do this. After many years dealing with Still’s I have learnt to judge when I need to increase my steroids and always tend to try and keep it as low as possible, due to my love/hate relationship with the stuff.  I am very careful with my tapering too.
  2. The GP made me agree to take my full dose of Tramadol for pain relief, which has taken the worst of the pain away at least.  I’ve also been taking the Naproxen he prescribed as a longshot.

These weren’t easy decisions for me to make.  I really don’t like dosing myself up every day and so have been keeping it all to a minimum for too long, which hasn’t done me any favours.  I realise this now; I was being stubborn and I wouldn’t advise it.  I needed this relief and, hopefully, it will only be short term while we get the Still’s under control again.

The Prednisolone must be doing its thing because I am managing to get out of bed on my own in the morning and am getting about okay; the chest pain and breathlessness has eased too.  My joints still aren’t happy though, with the odd grumble from my hips, stiffening of both knees and then of course, my left elbow and shoulder joints, which are terribly hot, stiff and swollen and seem to be unphased by any treatment – even the cortisone shots I had a while back.  It’s all bearable though.

On an even more positive note, we had a couple of friends round last night to discuss our trip to New York next month. Five of us are going to celebrate a 30th Birthday, but one friend lives in Spain so she couldn’t make it round obviously!  We spent the time talking about what we want to see while we’re there and, although I know it may not be easy physically, I am extremely excited about it all.  I don’t care if I have to pump myself up with Prednisolone and painkillers, I don’t want to miss a thing!

Hopefully, I’ll be feeling some definite improvement from the Orencia and Methotrexate by then anyway. I am now on week 6 of Orencia plus will be taking my 5th dose of Mtx tomorrow evening and I was told it usually takes 8-12 weeks for the two to be fully effective together.  Until then, I’ll just carry on being a good girl and take what I need to give me a better quality of life… I promise doc!

L

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I didn’t want to waffle on too much about myself again, but since we made some progress at the GPs yesterday I thought I should give an update.  The GP wasn’t surprised about the way I’d been treated at the local hospital and even admitted that he had seen some horrendous treatment there himself. He fully supported my decision to discharge myself and said we needed a plan that would help me to feel better without going back. 

First off, he would arrange for an outpatient CT Scan just to make sure I have no blood clot, although he agreed with me that my symptoms were more flare related.  As for the anaemia, he feels certain that it is Anaemia of Chronic Disease and that we can afford just to keep an eye on it for now. If my haemoglobin does drop any lower than it’s current 8.0, I am to mention to it to my rheumatologist and get the transfusion with him.

Finally, since the main thing that is bothering me right now is pain, we discussed my painkillers.  I currently take Tramadol and have refused anything stronger in the past because I worry about masking my symptoms too much and also about becoming reliant on/resistant to pain medication.  I don’t even take the full dose that I am allowed, even with the amount of pain I’ve got at the moment.  Anyway, my GP made me agree to take the full dose every day this week to see if it did take the edge off and, if not, said he would prescribe something stronger when I see him in a week’s time.  He also prescribed Naproxen, which is something I took way back in the early days of my diagnoses and never bothered with since; but I’m willing to give anything a go right now, even if just for a little more relief and mobility.

So there we are, it felt like progress to me and I at least have an appointment with him again next week (without having to phone days in a row).  It should be enough to tide me over until my next infusion on the 25th August, when I will see my rheumy again – he’s currently on holiday.  I’ve put my Prednisolone up again, which takes me back to the worries I had previously, but I need relief.

My next ‘worry’ is that we are going to Oxford for the weekend later today, as our friends are getting married tomorrow.  It seems crazy in a way to even contemplate it, but I guess it’s just one of those things you have to try and get through as best you can; plus, I’m really looking forward to it! I’ve never been to Oxford before, so that in itself will be nice. The Ceremony is quite early in the morning and then they are having a campsite barbeque reception – which will be a new experience too! Hopefully, I’ll be able to fit in some rests back at the hotel and will just have to pace myself the rest of the time, but at least I know I will be looked after.

Of course I wish I didn’t have all this to worry about, but you have to make the most of what you’ve got and, besides, I hate having to put my life on hold.  So, here’s to the happy couple – and to enjoying our lives despite this horrible illness, just doing so at our own pace.

L

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I should start by saying that I’m writing this is in retrospect due to events.

I’d booked an appointment to see my GP this morning (Monday) so that I could inform him how things were going with my new treatment, test results etc and hoping to discuss my painkillers. I was disappointed to find it was a Locum doctor but filled her in on the situation as best I could.  She was very concerned and, listening to my chest, told me I looked awful and that she was worried that my anaemia and tachycardia were putting a strain on my heart; that she was sending me to the local hospital for a blood transfusion.

Now I’m always a bit hesitant to go to different hospitals to the one I’m treated at the majority of the time – the one where my rheumatology team and all my notes are based. In my experience, doctors that don’t know me tend to look at my results and ‘freak out’ a bit. But I’d been told I would be out by the evening and figured that treating the anaemia might make me feel a bit better than I was at least, so off we went.

We went straight to the Emergency Assessmet Unit, where they were expecting me, and a nurse took my obs, some blood and fitted a canula (into what seems to be my only remaining vein to comply!)  After a short wait, I was seen by a doctor who wanted to know what had led up to me being there, so I tried to explain as best I could about starting my new treatment, my worries about anaemia and methotrexate and the rough time I’d had over the weekend, all the time thinking they were looking into the cause of the anaemia.  So you can imagine my surprise when the doctor said that she thought I had a blood clot on my lung!

I was treated for a Pulmonary Embolism when I was 16, but although I’d mentioned some minor chest pain, this was more akin to what I’d experienced in January with Pericarditis and nowhere near as severe as the pain I’d had as a sixteen year old – not to mention that I was barely conscious at that time.  But I understood that they needed to rule this out for themselves and so agreed to the tests and CT scan, even though it meant another stay in hospital. After all, it is better to be safe than sorry, and I was still hoping that it would lead to some relief.

I couldn’t have been more wrong!

L

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My GP wanted to see me to discuss a few things and so I went for an appointment this morning; I wasn’t expecting it to go quite as it did.  Firstly, he said he was very concerned about my latest blood test results and said he’d never seen anything like it before (it is only a small practice I suppose!).  He wanted to make sure that my consultant was aware of how things were getting and I assured him that he was and that we were waiting for a date to start the Orencia.  He then asked me if I felt well enough to be at home or would I feel better being admitted into hospital; well obviously I didn’t say the latter since I don’t see what good being in hospital would do right now.

So after getting that out of the way it was onto the folate deficiency.  He doesn’t agree with starting the Methotrexate just now for the reasons I mentioned before, but obviously says it is up to my rheumy.  Hopefully, by the time it comes to that my blood tests will have improved anyway.  What he was most concerned about however is the cause of the folate deficiency since my diet is full of fresh vegetables, which are the main source of folate.  He asked the usual questions about any stomach or ‘toileting’ problems (to put it nicely), which I do usually get alongside my Still’s flares and had just been putting up with.  In fact, in the past I have suffered from malabsorption and been tested for Crohns Disease, but each time the results came back as inconclusive; all of which I told him.  So I guess we have been here before.

His conclusion was to hold off on the Crohns testing for now and instead test for Coeliac Disease, which just involves taking another vial of blood at my regular blood test next week; in the meantime, the Anaemia should improve with the Folic Acid I started on Friday.

Finally, he’s arranging for the surgeons to see me about opening up these chronic abscesses as he feels that is the only way to get rid of them.  Another hospital visit to add to the list but at least we may be getting somewhere on the road to the recovery.

L

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Feeling a little disappointed today since I was supposed to be meeting my friend and her four other bridesmaids for our dress fittings in Manchester, but the steroid injections haven’t kicked in enough to allow me to travel/stand for long/lift my arms so I am giving it a miss.  It’s a shame because I don’t see enough of her as it is, now that she lives in London, and I was looking forward to a catch up. These things can’t be helped though.

In other news, my GP phoned me today to say that my last blood test results were getting worse and that I was now lacking in Folate too, which he feels is playing a factor in my Anaemia  (Hb of 9.7 for anyone interested in figures).  I have been told in the past that I have a ‘different’ type of anaemia since my Ferritin levels are usually quite high; that my red blood cells are larger than normal and abnormally shaped, meaning they don’t transport efficiently… but nobody has ever put a name to it or done anything about it. 

Now my new GP decided to look into things straight away and this is what he has come up with – Megaloblastic Anaemia.  We had a chat and he arranged for me to pick up a prescription for Folic Acid this afternoon, which should help.  The only thing I am worried about is that I am due to start Methotrexate alongside the Orencia infusions and this is a recognised folate depleter; in the past I had to take it with daily Folic Acid anway.  Whether this will effect the decision to start the MTX I don’t know… I didn’t have a good experience with it first time round and I still have my concerns now.

I guess only time will tell.

L

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