Interested in your opinions on this. Autoimmune illness.

[beaton]

In retrospect,I started on the downward spiral way back in 1979. That January I had "flu" followed by psoriasis. I had a one year old child,was working full time and kept house. I was tired but thought it was my busy life. I had a second child in 1980 and was still working. During the next few years I was having problems with my digestion,bloating and my muscles felt and looked puffy but I carried on working.In '90s I started suffering with arthritis but no one made the connection to the psoriasis. In 2009 The bloating and weight gain had become so bad I gave up wheat and started to feel more comfortable. I had my gallbladder out in 2012 after gallstones. I was also diagnosed with an underactive thyroid.

I had been under a rheumatologist for three years (2009-2012) but he dismissed me to the pain clinic as I could not tolerate the medications he tried. So I asked to see another rheumatologist,who I saw two years ago. My follow up appointment was yesterday, ten months late. All this time I have been having problems with my feet,I think it's Morton's neuroma. and I am in constant pain,sometimes worse than others.

So yesterday:- arrived in plenty of time and waited over half an hour after my appointment time,only to see a registrar. The man himself was not in the hospital. This young women thought I was a training exercise. I told her my feet were the biggest problem but she wanted to test all my joints, Then she wanted me to go. No I had to get assertive. This problem as far as they are concerned has been going on for seven years now without any satisfactory treatment. When she know I was not satisfied she offered me x rays and another review, Not good enough in my opinion. I did manage to get ultrasound out of her but feel very hard done to .

Do I write and complain? see my GP again?? where do I go from here. I had to give up my job and only gor I year of ESA. so I am reliant on my husband. Is this right.

Sorry this is so long but it's been a long time coming.

[Hidden]

Hello

I suffer the same problem since 1984 so I now just have to accept my lot, like you I am unable to take DMARDS although they keep pushing them so now all they can do is monitor my condition, I suffer extensive small joint artritis and arthritis in the tendons shieves and neck problems C2-3, hips and lower back problems with Osteoarthritis in knees to name just a few areas effected, like hands and feet

All I can suggest is you keep at them, we all get to the end of the treatment routes and when we get older Biologics do not seem to be a viable alternative

Good Luck

[beaton in reply to Hidden]

Thanks Borderriever,Just so frustrated, every time I have an appointment I think I'm going to make progress but no. So fed up with the pain.xx

[Hidden in reply to beaton]

Now lived with this for most of my adult life, eventually I feel I am now numbed by it all, so will just have to get on with it. Mind it can effect your mental health as well, with being in pain most of the day etc,

Flare ups give you something to look forward to especially at certain times of the year.

Keep taking the tablets, variety is the spice of life

Keep a hold LOL

[beaton in reply to Hidden]

[cathie in reply to Hidden]

Sorry, but why are biologics not viable for older people?

[Hidden in reply to cathie]

Hello Cathie,

According to what I have read as we get older, the chances of severe contraindications are more possible, including cancer.

Although you need to understand the chances here are very slight. Older peoples immune systems can become less effective, that is one reason why old people begin to suffer amplified illnesses than those of the young. I prefer not to take this type of medication.

Mind if I am told to take them I will do so,as refusing medications is not on my agenda.

BOB

[Hidden in reply to Hidden]

This is worrying, what do you mean by severe contradictions? Would these contradictions be caused by medications or the actual RA? I appreciate you say the chances are slight but can you explain please?

[Hidden in reply to Hidden]

Hello kiki

There is really nothing to worry about here, we take DMARDS that includes our infamous MTX, they can cause as much trouble and we accept these on a regular basis. with all its blood tests etc.

We make informed choices and read the instruction paper in the boxes of these medications.

When we are born from life to death we always take risks and hope these risks will work well for us, there is no difference here. We need to relieve our problems with our conditions, RA is an immune system that is attacking our joints, if we lived several decades ago our grandparents would have suffered very serious deformations to their joints. Today this problem is more rare, this is because of the medications we are advised to take.

One thing here we all must do is to become informed of what we inject or swallow and the risks associated with their taking. Life is a gamble we undertake it so as to make it that much pleasurable.

Biologics are just the same, they work, and there are contraindications. Medications in these groups do effect the immune system we all need to accept that.

That is why they keep an eye on us all, and we are supposed to contact them if we find or feel something that is untoward

All the best, please do not worry

BOB

[Hidden in reply to Hidden]

Hello Bob, thank you so much for explaining, what you have written has made a lot of sense! I'm not yet on Biologics but have had problems with DMARDS. It's the same old thing really repeating itself really but a constant issue we face with these meds we have to take to get our lives back to some kind of normality. I detest RA but I have it and have to get on with it, just wish it wasn't such a battle. Best wishes Bob and to Beaton , thanks again

[cathie in reply to Hidden]

what we really need is a course in risk. My husband is a statistician and deals with modelling vaccine risk among other things. But I think its a difficult thing to grasp isn't it. Like I have much greater fear of the risk of flying than driving up the A9. If you know the accident figures on that road, its safer really to fly!

Another thing is that we have autoimmune illnesses because our immune systems seem to be in overdrive. So the meds should compensate. Bob, your idea is important and useful and should encourage us to make sure we get properly monitored when we're on meds. After 2.5 months off all meds I'd do anything to go back to the dreaded mtx, but they have noticed liver problems so I've been stopped. Hopefully I'll be getting something else soon. And I wont hesitate, but then my age has to enter into the calculation and I'd rather have ten more years of proper life than twenty half-life in pain.

[Hidden in reply to cathie]

Cathy

In a way I agree with you, like you now I am beginning to show a weakness in my liver and kidneys sometimes I wonder if my informed choices are or may shorten my life. It is like a doctor saying we cured the patient, the patient died, we never know how the dice will be thrown.

I am sorry to be so blunt although this is how it is in my eyes and I do not want to be melodramatic.

BOB.

[cathie in reply to Hidden]

I'm a bit of a drama queen too. BUT my father lived til 101 and really cured me of wanting to live to a great age. My own thing is I'd like to live as long as I can being able to see, hear and go to places and if taking some medication I can live autonomously - or as near as I can, then that is enough. after all we might fall under a bus tomorrow...

[Hidden in reply to cathie]

Hello Cathie

That is how I look at things now my family lives to near ninety and I see the failings of being ill in old age. The old saying

Eat, drink and be merry

Tomorrow I may die

Comes to mind,life is for to tennious to worry about it all

All the best

BOB

[cathie in reply to Hidden]

I hope you are eating, drinking and making merry out there!

[Hidden in reply to cathie]

Cathie

CHINK-CHINK

All the bes

BOB

[cathie in reply to Hidden]

slainte!

with my 1% alchol cider from waitrose... we edinburgians have ways of enjoying ourselves!

[Hidden in reply to cathie]

Hello Cathie

Your old town means a lot with my Wife and I she spent over six months there for her training. Also we used to be up at Perth several times a year. and again up towards Inverness, We were strangers in our old town.

We were meant to move up to Fort William and lost our brains over Berwick way

I need to visit friends soon as I need some of my favourite Malt Whiskys.

All the best enjoy that Cider, I drink a lot of the Pear stuff now

BOB

[cathie in reply to Hidden]

Let me know when you come near if you'd like to meet for a coffee. Do you know the new whisky on Lewis? I think there are two new distilleries. Very peaty

[Hidden in reply to cathie]

Hello Cathy

Could pop in on way up.

Out of touch with these new types have not been up on Lewis for quite a while so will need to do my homework.

I like the Talisker and Macallen whiskys and Edrador whisky at Pitlochry. I am hoping to visit The distillery near Haddington this year as we are not having a summer holiday this year.

All the best, Pax is getting upset as I have been on the laptop to much for his liking.

All the best

BOB

[cathie in reply to Hidden]

Keep in touch on this

[Hidden in reply to cathie]

Ok Cathie

Will do thanks

BOB

[norfolkjo]

I am so sorry I have psa andi too was misdiagnosed as flu post viral fatugue and a frozen shoulder. When I sprained my wrist and went to a and e a sharp eyed nurse clocked my many sprains and my nails and told me to get referral. I was diagnosed last nov thirteen years after first symptoms thanks to her advice . I too had no idea my psoriasis was related. I have found I need to be bolshy to get them to listen. I keep diary which they are happy to read . My gp says she could treat me by email as I always have a note with me. Its the only way I remember to mention things. We seem to have two fights one the disease and one to be heard xx good luck xxxx

[beaton in reply to norfolkjo]

Thank you Norfolkjo,nice to know I'm not alone in my fight.xx

[allanah]

Keep going Beaton, push and push till they hear you. Take someone with you, my hubby got more done coming with me for one visit than I had in six!

It's awful we have to be our own ambassadors especially when you don't feel well but keep going at them and be specific, I have lots so symptoms, what will you do about it.

Maybe change your GP if you aren't having any help fom them? Ax

[beaton in reply to allanah]

Thanks for the encouragement Allanah, Yes I wish I had taken someone with me now.Just getting assertive left me dry mouthed and shaky.xx

[allanah in reply to beaton]

Yes !

I also took about 60 photos with me!! Doc looked at them and said they were very helpful! My husband pipped up, she took them as she thinks you don't believe her! He did look shocked but it helped and got me sorted! Keep pushing ,go to your GP when you are in flare and tell them you can't manage then keep the photos. Good luck, keep going until they sort you.

Ps just a thought dry mouth shaky sore feet? Have they tested your blood sugars? X

[beaton in reply to allanah]

Thanks Allanah.xx

[Barrister]

After having pain in my feet for 6 years and my GP ignoring it, I thought that I too had Mortons Neuroma. So whilst abroad (with private health care) I was given an MRI which didn't show Mortons Neuroma but signs of RA. Now I have diagnosis of PsA although I don't have psoriasis but there is a great deal of auto immune disease within my family. I refuse to give up and let doctors off the hook and you shouldn't either. I agree with Allanah, go back, take someone with you, take photos and keep on at them until they take you seriously. Clemmie

[beaton in reply to Barrister]

Hi Barrister,Thanks for replying. How interesting. I shall wait until I've had my ultrasound and then let them have it with both barrels. I'm going to print of (only) my opening post and give to each of the medical professionals I have to deal with.

[Barrister in reply to beaton]

Good for you! Good luck. Clemmie

[beaton in reply to Barrister]

[Coastwalker]

Hi beaton,

Sorry to hear that you have had such a rough ride, it is it such a fight to get anywhere, but if you don't fight you loose the chance of getting yourself well again, it's so not right.

You mentioned digestion, bloating , muscles felt and looked puffy , weight gain, but gave up wheat and felt better, my thoughts are (though I may well be wrong,) that these symptoms all fit in with under medicated Hypothyroidism, (not being at your optimum medication, like you need to be with Hypothyroidism.)

Also it maybe that you are not converting your medication from T4 medication to T3, you mentioned the wheat problem, that sounds like you might have an absorption problem, many of us do, so your T4 might not be converting over to the active T3 that your body needs. My medication (Levothyroxine) had to be upped several times.

When was the last time you had Thyroid bloods checked. ?

I now always ask for my blood printouts and their ranges to check for myself. Often we are told blood tests are normal and within range, but we are still showing Hypo symptoms. Many people now know not to rely fully on blood tests alone.