loooong story....but I didn't sign up for this!

Haven't posted for a long time although I check in most days, I've been having a pretty crap time of it for quite a while and I tend to go into a corner at those times.

I have Rheumatoid disease and osteo arthritis, I didn't tolerate methotrexate in the early days so have been on sulphasalazine and hydroxychloroquine for over a year, although it seemed to do nothing for the fatigue it made the pains and aches more bearable. In fact I didn't realize the sulphasalazine had been helping till they stopped it 8 weeks or so ago because of raised lft's.

A couple of weeks later the rheumatologist phoned to tell me to go to my GP as the levels were not going down.

The GP told me that my Alt (?) level was 536 and should have lowered if it had been caused by the sulphasalazine and referred me for urgent bloods chest X-ray, (clear) both of which I had done within a few days, ... and a liver scan.

At around 2 weeks after stopping the sulphasalazine I started to get a hoarse voice, no reason that I could think of, no sore throat or cold or cough, and a rash on my palms, both of which I still have.

I have been waiting for an appointment for this 'urgent ' liver scan For 3 weeks now and finally this morning, due to the GP's angry intervention, got one through for the 24th of this month....can't imagine how long a non urgent appointment would take ,

The GP took me off Simvastatin 2 weeks ago to see if that would have an effect my Lft's and sure enough they came down to 226 and 132 (which mean nothing to me!) which is half of what it was, I was encouraged by that, my thinking being that if it was something sinister there wouldn't have been an improvement, and I know that livers can recover. (I stopped googling lft results when it came up with liver cancer and cirrhosis.)

Then 2 days ago the GP phoned to ask me to come in to see her that morning. She asked me if my hoarseness had gone, "no" I croaked, I've been intermittently hoarse for 5-6 weeks now it comes and sometimes completely goes during the day, so she has referred me for a fast track ENT appointment meaning that I have to be seen within 2 weeks, she mentioned that it was the fast cancer tracking system as she wants to exclude throat cancer.

She also took more bloods to test for glandular fever and hepatitis.

I have read recently about cricoartenoid joint involvement in R.A. Has anyone else had this? If so would you consider sharing your symptoms?

So, here I am in the middle of all this. R.A. Symptoms worse because of sulphazine withdrawal, anxiety about all these tests, no statin so who knows what my cholesterol is like, it was 8.2 when they put me on it years ago, hoarseness, rash, .... I could go on.

I have my 6 month appointment with the rheumatology doctor next week but I don't

imagine there is anything they can do about meds till all the results are through.

I've done everything I've been told to, taken all the medication I've been given (tho I hate medications) I don't even drink alcohol dammit!

I have said it before, and I'm well aware that there is no complaints department, but I did NOT sign up for this !!!

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6 Replies

  • Oh dear that's harsh - you poor thing. At least your GP is being thorough although it does feel like urgent doesn't have the same meaning to us as it does to the people making patient lists up I know. Hopefully your liver will repair itself now (but it takes a long time I've been told) and hopefully too the hoarseness will turn out to be something minor - but I relate to your experience of being ill despite trying your damndest to look after yourself. Tx

  • Thanks twitchytoes. You are right about her being thorough though, I Just had another phone call from my GP to say hep b and hep c are clear but cholesterol's gone up to 7, I have to stay off the statin tho because of the liver.

  • Oh dear Moifoi - it never rains but pours.. I really hope things all turn out to be just a horrible spell for you. Tx

  • HI Moifoi

    I have heard of the cricoartenoid joint, actually through NRAS. I got a nasty virus end of December which included a sore throat and landed up with sinusitis. It took 3 weeks of anibitotics to get rid of it but on my third visit the gp flagged my hoarse voice and asked how long I had had it I said 29th December so at that time over 3 weeks. GP said if it was still hoarse by the following week to come back. So I did go back as it was still hoarse and an urgent appt for chest x ray and ent was arranged. It is one of theose things that they flag up if you are over 50 and have hoarse voice for over 3 weeks, and yes it is to rule out cancer. My chest x ray is clear and ent found nothing suspicious I have inflammation there and my vocal cords are not closing properly. I have been put on gaviscon and omprezole for 6 weeks to rule out silent reflux and I go back in 8 weeks. I did mention the said joint to Ent as I had rang NRAS for advice as I am on Humira which is great for my RA but not so good regarding getting infections and they told me about the joint. I did mention this to ent and when I go back they are going to numb my throat with a spray to have a look a bit further down.

  • Thank you for that net2012, although I haven't had any cold virus or sore throat that preceded it I suspect that the hoarseness might be down to inflammation of this joint.

    Having read about it recently it appears that it is more common in RA patients than is recognized.

    Are you still hoarse now or did it resolve?


  • Yes since being told about it I have read up on it, and as you say seems quite common. I still have the hoarseness, it has changed I am quite deep voiced. 7 weeks now!!

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