Rheumatologist update

[Daisy1991]

Saw the Rheumatologist on the 14th, agreed that the rash looked like butterfly rash. He I had complied a list of events from when I thought I had my first attack. He listened and wasn't dismissive, he was the ANA test I had in march was quite high.

He decided to put me on hydroxichloroquine 200mg twice a day to see if it gets my symptoms under control. He hasn't said it is lupus, but what he did say was, that if the symptoms calm down we might be getting somewhere with the diagnosis.

Thank God they are now taking note of what I have been trying to get through to them all along, I think it really helped with the symptom events list.

I hope it isn't lupus, but if it is, a least I will know what it is instead of being in limbo.

Thanks for listening xxx

[ExtremeDuvetDaze]

That's good news Bev, you feel like you're getting somewhere at last. Do you know how high your ANA is and what pattern it is, mine is at 1:640 anti centromere pattern and I also have positive Anti Ro?

Limboland isn't a great place to be, half of me is still there...!

I really hope the Hydroxy works for you and you gets relief from your symptoms.

Diane 🌺xx

[Daisy1991 in reply to ExtremeDuvetDaze]

Hi Diane

Thank you, no I don't know how high it was forgot to ask, I was to busy concentrating on what he had to say. He asked me to do more blood tests on the day I was there. I didn't even take any notice which they were, I was in a bit of a daze when I came out, probably shock he wasn't dismissive lol

I started with headache and feeling a bit sick don't know if it is the heat or hydroxy, I am just gonna ride it out and see xxx

[ExtremeDuvetDaze in reply to Daisy1991]

It's too hot for me, I'm in the south east and it's already making me feel horrible on top of my normal everyday horribleness, makes me feel wretched, I can handle it at about 20/22 degrees. Thank goodness it's only for a few days!

It could be the Hydroxy Bev, it didn't make me feel sick but I had other side effects including the headaches and after six weeks of only taking half a tablet a day I've had to stop taking it, I'm so hypersensitive to many drugs, apparently it came as no surprise to my GP that I'm unable to tolerate it but I was pinning all my hopes on it as there are so many benefits to taking it and I had taken it for 8 years up until 6 years ago with no ill effects at all so I'm upset that I wasn't able to continue with it, the good thing about being on it was I slept much better, my blood pressure was much lower and my IBS was settled 🙂

I know others say they have side effects like the headaches and nausea that wear off if you stick it out so I have everything crossed for you Bev. My GP has given me a five day course of steroids but said she won't give me anymore than that without the supervision of a rheumatologist which won't be until October at least as I'm waiting for a second opinion so here I am thrown back into Limboland!😫 I've never had steroids before and not sure if taking such a short course is Worth it, I'm saving them for my really really bad days . I'm a bit weird when it comes to drugs even a couple of paracetamol makes me drowsy 😫

I really really hope the side effects wear off and that it works really well for you, it's a bit of a waiting game with Hydroxy and many swear by it.

Keep cool☃

Diane 🌺🌻xxx

[Daisy1991 in reply to ExtremeDuvetDaze]

Thank you Diane for the advice. It is much too hot for me today and we are in the north, south yorkshire.

The rheumatologist has put me on 200mg twice a day, don't know if that is to high for me????

They say they take a while to kick in but already I have noticed a difference with my stiffness and aching.

Was gardening early morning yesterday my face started to go red, like it does when I am abroad and I started feeling ill. It feels like a sort of panicky feeling, I get really hot and feel really funny inside and know I have to get out of the sun, I had only been outside for 45mins. I get a mild temperature, it was 100.1 degrees yesterday and when I come inside and have been in for a few hours my temperature starts to calm down although I felt off it all day. xxx

[ExtremeDuvetDaze in reply to Daisy1991]

That's really good that you're already noticing a difference and yes that's how I feel in the heat and in direct sunlight even after 5 minutes I start feeling completely exhausted my heart pounds, my head feels weird and it just makes me feel really ill, I don't get the butterfly rash but I get really red faced with one cheek that has a rash that takes ages to calm and my arms and chest will go blistery rashy red if I'm not careful. The trouble is when it's this hot there's nowhere to cool off except the fridge, I have a small frozen bottle of water to hand so I can rub it all over to keep cool, it's lovely, my feet and hands feel swollen and are burning complete opposite to my Raynauds. Can't seem to win!

I believe lots of people are on 400mg Hydroxy a day and some 200mg, I started off with this dose but had to decrease it in order to try and tolerate it. I kept at it but just felt too yuk on it, it amplified all my symptoms as though I was in a major fibro/lupus flare! Oh well onwards and sideways we go....😜

Take it easy if you can Bev.

Hugs🌺xxx

[Daisy1991 in reply to ExtremeDuvetDaze]

I was starting before the 45mins but 45 mins was my lot.

My hubby loves going aboard and I am not bothered because of the heat. Going in June was a one off, but luckily it wasn't that hot, in fact cloudy on some days, which suited me fine. We normally go march and October for that reason.

We are due to go this October will have been on hydroxy for 11 weeks by then, I am hoping to see a difference in how I feel. Does it prevent flares or does it just lesson them?

Thanks Bev xx

[Daisy1991 in reply to ExtremeDuvetDaze]

I ment to add, it says not to good to use hydroxy nerve problem, doesn't fibro involve the nerves? So maybe that is why you are intolerant to it, just a thought xxx

[ExtremeDuvetDaze in reply to Daisy1991]

Hydroxy dampens down flares and symptoms and can help with fatigue which is one of my worse symptoms.

Yes you're right about the fibro, I have a cousin with it and she said to be careful as it can cause muscle and joint pain so not good if you suffer with fibro, I didn't really think it would make things worse, I'm pretty sure now that it was the Hydroxy . 😞

It'll be interesting to see how you get on with it and hopefully your symptoms will be less or won't appear at all next time you are on holiday.

Hope you've managed to get through today's heat, I'm definitely feeling worse for it this evening!

Take care 🌺Xxx

[Daisy1991 in reply to ExtremeDuvetDaze]

I agree that fatigue is the worst symptom. I work and when that strikes I find it very difficult to operate, my concentration goes, I can't remember what i want to say and I often go to the car to take a nap at lunch time, not that it makes a lot of different.

It will be interesting to see how I get on on holiday, fingers crossed.

My friend has fibro and I know what she is like, twice we have had to cancel lunch dates in the last too weeks because she has not been well. She cannot work because of it. It is terrible, do I feel for you.

All you can do is manage the symptoms day by day.

Sending hugs xxx

[ExtremeDuvetDaze in reply to Daisy1991]

I feel for you too Bev because I know what it's like to try and work with awful fatigue, I kept going for such a long time until last year and it all got too much, I just couldn't continue and your poor friend, yes that's what it's like always cancelling things, planning is so difficult, people know now that there's always a chance I can't make something, I rarely plan anything because of it and I don't want to let people down or myself, it's so frustrating, I've suffered it for six long years, when I do push myself I suffer for it the next day or longer!

I've been for blood tests today to check for Antiphospholipid syndrome, crikey they take loads for the Lupus anticoagulant test! It's never ending !

Like you say just have to manage day by day, tomorrow maybe a better day.

Thanks for the hugs, sending some back your way too..😘🌸x

[Daisy1991 in reply to ExtremeDuvetDaze]

Thank you for the return hugs. I am just glad my symptoms come and go. It must be terrible when it is constant. I really don't know how you cope, I think I would go out of my mind.

I hope your blood tests show something, then maybe you will get some meds to help, here's hoping xxx

[ExtremeDuvetDaze in reply to Daisy1991]

Thanks Bev, yes there are moments when I feel it's all hopeless, I keep thinking one day I will get my life back, I just have to think that I do sometimes have better days so maybe one day those better days might just go on into weeks again....at the moment it's one day at a time!

Am just so glad that awful stifling heat has lessened.

Take care 🌺Xxx

[Daisy1991 in reply to ExtremeDuvetDaze]

You to, I am so glad it is getting cooler also, I can't hack it too hot.

I hope you get sorted soon xxx

[Hidden]

Hi Daisy, really glad you are getting somewhere. I know how frustrating it is to be left in limbo land. I hope that the Hydroxy really helps.

[Daisy1991 in reply to Hidden]

Thank you xx

[apexx]

As a fellow resident of limbo, I can't imagine how hopeful you must feel! This is fantastic news; obviously not great that you're in this position to start with, but I am so glad your rheumy is listening to you and you're on the road to diagnosis and recovery! I hope it all continues well for you and that you keep us updated!

[Daisy1991 in reply to apexx]

Thank you will do x

[EOLHPC]

HURRAH 👍👍👍 🌟🌟🌟👏👏👏

Please keep us posted

🍀🍀🍀🍀 coco

[Daisy1991 in reply to EOLHPC]

I know that is what I thought, I am hoping it turns out to be something else. I have suffered with fatigue etc for years off and on. And never thought about this till yesterday, but in 1981 I had hepatitis and about 1983 had pleurisy. I don't know if it is connected or coincidence but thought I may tell rheumatologist about it x

[Mystik]

Let's hope it not otherwise just deal with it like we all our a day a time

[Daisy1991 in reply to Mystik]

Thank you x

[Footygirl]

Hang in there Daisy. We hear you. We understand. It is some ride we are all on and it gets a little easier if someone listens and we get treatment. I hope the Hydroxy works well for you and you feel an improvement.

Unfortunately, it will be what it will be but with treatment and bags of support from people who understand and share your unease and hopes I hope you will feel better.

Remember you are not alone and we are here for you. Please keep us up to date with your progress.

Love

⚽️

[Daisy1991 in reply to Footygirl]

Thank you, getting headaches at the moment and fell a bit sick, I don't know if it is the heat or the hydroxychlroquine, just riding it out to see x

[Mimi1950]

I hope it is not lupus too. I wil pray for you.

[Daisy1991 in reply to Mimi1950]

Thank you so do I x

[Daisy1991 in reply to Mimi1950]

Thank you x

[Nixta]

Good to hear. I have been on two Hydroxy a day since the end of Feb and have gradually got better and better - to the point now that I almost feel normal after years of battling. If you can take it, Hydroxy (Plaquinel) anti maleria drug is brilliant. I have had no real side effects apart from some in the first couple of months (headaches, bloating, etc) that have all calmed right down now. I read of someone who had been successfully on it for 17 years with no ill effects. Also a study that showed if you can tolerate it, patients live longer on it than not. So give it a chance and hopefully your symptoms will settle too.

Sending you positive good forces!

[Daisy1991 in reply to Nixta]

Thank you for the advice I will. The aches and stiffness are greatly improved already. Glad to hear things settle down after a while. I know I feel better with it than without xxx