Hello All

I decided to start a new blog with the new problem as the title of the previous one didn't quite 'fit the bill'!

INTRO ...taken from previous blog!

Just when I thought things were tripping along nicely, thank you very much, along comes a nasty U-turn and plans sent into disarray! I have been having breathing problems for 6/7 months, not entirely sure when I first noticed! As my drugs have changed continuously over the last two years it has been difficult to pinpoint a possible cause. I have put on about 2.5st due to high dose prednisolone so tended to put the tight chest, wheezing, shortness of breath down to being generally unfit and overweight. However, just over a month ago (March) I decided enough was enough and a small increase in my white cell count made me think I might have a low grade persistent infection. So off I toddle to the GP!

I fully expected to come out with my mitts tightly grasping a prescription for antibiotics ... no such luck! Doc is very concerned that I might have lung disease (due to methotrexate) so I leave with a ticket for an urgent x-ray, do not pass go do not collect the measly £200 ... go straight to hospital!! I did (Yes, for once did as I was told without argument ).

That was on the Friday. The following Tuesday I had an urgent rheumatology appointment. Rheumatologist tells me "x-rays fine, no change from previous ones". Goodo, at least I can cross lung disease off the list, phew!

Wednesday I go for spirometry. Used the inhaler as instructed before appointment, not that it made a scrap of difference, and proceeded with the deep breathing and exhaling! Not only did I pass the ruddy tests I excelled apparently Duh ... However on the Thursday my chest was so tight and it took me three hours to get my breath back after getting up, getting washed, making the expedition downstairs and drinking a mug of tea!

Went back to see my GP three weeks ago who was stumped by the symptoms. He's not normally one to be lost for words or a diagnosis! The inhaler has no effect which appears to rule out asthma. I am always anaemic, Hb never reaches the minimum of 11.0 and hovers at about 9.0. He thinks perhaps the combination of anaemia and weight gain might be the problem, but admitted it was a shot in the dark. So, on with yet another course of iron! If no luck it will be referral to a respiratory specialist.

After all this palaver I now have a tight chest almost all the time and I get out of breath even more easily! Went back to GP yesterday (Monday 23 April), I tell you, Puff the magic Dragon, may well live by the sea but he has nothing on me when it comes to breathing!! Having exhausted what seems to me to be most/all other possibilities I think Methotrexate has to be the culprit I’ve tried anti-histamines (in case it’s an allergy), Ferrous Fumarate (to improve the anaemia), Amoxycillin (in case it was an infection!), increasing Prednisolone (perhaps I’d cut it back too quickly) resting for long periods and nothing makes any difference! This is the same Methotrexate that I spent a long time trying to get back after previous episodes of neutropenia!

My GP is very concerned that rheumatology haven’t taken these problems up before embarking on yet another course of treatment, ie Cimzia, which is normally taken with Methotrexate. He believes it is the culprit and thinks it could be early symptoms of pulmonary fibrosis. He has referred me back to rheumatology requesting an urgent CT scan, this may provide a more detailed picture of what is actually going on. I am not taking any more Methotrexate for now until the cause has been firmly established, and the Cimzia now has to await the outcome of the investigations. Sods law though, Healthcare at Home phoned last night to arrange my first delivery; had to put them off for a week as I don’t want to be taking delivery of something I might not be able to have! Hoping I’ll hear something soon but things in rheumatology don’t ever happen quickly in my experience!


A couple more trips back to the GP with worsening symptoms and you're up to speed ans ready for the next instalment!

Crumbs Lynn you are having a rough old time. I really don't know what to say apart from I hope you get some answers quickly and they sort your meds out for you.
Will be keeping fingers crossed for you.
Best wishes
Mary

Crikey Lyn, you don`t do things by half!!

I`m so sorry to hear this - had no idea your heart was causing a problem. Thank goodness you went in as an emergency and at least got taken seriously. I can`t believe you haven`t yet seen a cardiologist - surely one should have visited you while you were in hospital? They sent one to see me three times in two days while I was on the ward.

I hope you get seen quickly and they can get the problems under control so you can feel there are better times ahead.

Take care,

Kathleen x

Dear Lynn


Crumbs - goodness what a time you have had especially these last few months. I really hope that you see
the Cardiologist very soon and that he begins to sort you out on the right medication. Poor you, I do feel
for you.

Life is cruel and you certainly have been given more than your full share of health problems/

Please take care and enjoyed being pampered.

Love From Rose x x

Hi Lyn

Thank you for posting about all that happened last week, providing a full picture of the events. I have to say too that I am absolutely shocked and baffled and confused that once you were diagnosed with advanced heart failure at the hospital you were then sent home without ever seeing the consultant, I think this is totally unacceptable, and going by the length of time you have to wait in your neck of the woods I just wonder how long it will now be before you see the cardiologist. I really do not think this fair on you Lyn, I think you should contact PALS at the hospital and see if there is anything they can do, if only to speed up this appointment. I hope you are enjoying this lovely spell of weather it certainly makes life a little brighter

From Mrs Angry in Kent !!

Much love Julia xx

Hi Lyn

So sorry to hear that you are having such a rough time of it. I do hope that Cardiology manage to get to the bottom of your problem and are able to offer you something to stop all this breathlessness.

Best Wishes

Sue

Hi Lynn,
So sorry to hear you are having so many problems. It must be so worrying for you. Did anyone ever suspect at any time that your breathing problems could be heart related before you went to the hospital? I remember reading an item in the nras mag. some time ago about the need for more awareness of the efffect ra can have upon the heart, and the lack of routine heart checks being carried out on ra patients. Its such a good job that you took yourself off to the hospital, it must have been very scarey. My mother suffered from emphasemia, and I know how frightening breathlessness can be. At least something is being done now and you are on the appropriate drugs. Hope you get an app. with the specialist soon.
My very best wishes and hope you will be feeling better soon. Zena x.

Oh my goodness. What a terrible shock for you. I know the breathing issues have been going on for some time and had you and the doctors mystified. It's so good that you went to hospital when you did, although it sounds like you had no other option. It's awful that this wasn't picked up earlier and so frustrating that it hasn't been as straightforward as it could have been. At least now you know what you're up against and can get the treatment that you need for both conditions. I have been wondering what the outcome was going to be for you and I'm so sorry that you're having to deal with this. Please keep posting. I'm sending hugs and my best wishes but I wish I could be of some real help to you. Naomi.

What a good job Lyn you went straight down to hospital, this wouldn't have been picked up until a later date, it doesn't bear thinking about.

I hope you don't have to wait too long to see a cardiologist and they can get you on the right track with treatment. It's a matter of your rheumy and cardiologist getting their heads together to come up with a solution for your medication isn't it? I have read that having rheumatoid arthritis doubles the risk of heart failure due to chemicals related to inflammation, and RA patients whose blood has the Rheumatoid factor antibody has the highest heart failure risk. Not cheerful is it?

On a more positive note at least it has been diagnosed and you understand now why you have been having all these wretched breathing problems. What amazes me about this R.A disease is how quickly other problems can appear, and become an emergency. I think we all need to take note of this.

Thinking of you and hoping you see a way forward soon.

Love
Rebecca x

Hello Lyn

Just been reading all of the above and I am totally lost for words. I've been thinking about you after talking to Jean at the meet up, well you will know that because of my message to you via facebook. What I really can't understand is:

If they knew that heart problems can arise with RA or the drugs, surely because you have had the illness for so long, been on all the drugs for years, somewhere along the line this should of been checked. I also think that if they know of these problems they should at least once a year give people who have had RA over a period of lets say 10 years a MOT, not wait until problems arise and we need urgent medical treatment. That to me is shutting the stable door once the horse has bolted.

Your point about being aware and not putting everything down to RA - well this time last year I was admitted to the emergency admissions unit at my hospital. Long, long story (I did go there saying that I was wasting their time but GP wanted me to go). I had some blood tests done in A & E and because of the results ended up on the ward. When the consultant came to see me she said that the rouge blood results were down to my RA and I went home. I did ring the RA nurse up after the Bank Holiday weekend (last Spring Bank) and her first words to me were ''I wish they wouldn't put everything down to RA''. She did check the blood results and did tell me that they were right, but it just goes to show that for the specialist nurse to say this it must happen alot.

Just hoping that things get sorted for you soon and no waiting for appointments and the medication that you are taking is helping.

Can I just ask you Lyn re your AST results? I don't know if you have read my recent thread about my AST/ALT results (thread tilted feeling let down), but mine reached 257 at one stage. Yours was slight lower than what mine was and you had liver congestion, but at the time I was told that it still wasn't high enough to be anything serious, it would have to be in the 6 to 700 before it was serious.

Sending you gentle ((((((HUGS)))))) and hope you are feeling better.

Love Paula xx