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484 Posts
Discussion Starter · #1 ·
Hello all

Just a quick line or so to let you know what happened at my rheumatology appointment.

I wrote a post questioning my diagnosis since my last letter from my consultant said my blood tests were more or less normal.

She spent a good while explaining everything to me. She said there was no mistake - that whilst my lupus was mild it was being monitored to keep it that way. She said the reason for my appointment yesterday was to find out how I was doing, that if I did not feel better on Plaquenil she might have prescribed other medication to help. She said the fact that I have had positive bloods is less important than the symptoms I presented with over a year ago.

She was very happy that I feel so much better. She said we could continue with the 400mg or drop down to half and see how I go. She said if I stopped it I might be fine for 3-6 months, but then flare and have to start again ... side-effects ... a long wait for it to work again.

In short she advised me to stay with the Plaquenil, and we have agreed she will write to my GP to say he should prescribe either 400mg or 200mg depending on how I feel and what I want to do about it.

I'm going to stay on 400mg for another month and if I stay well, reduce to 200mg.

Thank you for all your advice when I was feeling unsure.

I remain pain-free and well and link this very much to Plaquenil, so anybody worried about 'taking drugs' who is prescribed this medication - please take heart. It has really, really helped me. It has taken about 10 months, I think, but it is well worth it.

I remain forgetful, but have gained in stamina and I am not in pain. This is particularly important because I had not really found any analgesia that completely took the pain away so I put up with the feeble effects of anti-inflammatories that gave me unpleasant side-effects. \

I now rarely go to bed during the day, and I can swim 30 lengths or for 30 minutes with no problems 3 times a week. I even stay awake during my little horticulture course, which is all day twice a week. I am doing all the taxi driving for my family again, and intend to try to go to work part-time (doing what I do not know!) at the end of summer. I even do the yoga every week too.

Not that long ago I was tired when I woke up and could have slept 24 hours a day were it not for the fact that I was being kept awake most nights with pain. I was reduced to weary tears on many occassions, and wondered how I would ever adjust to such a miserable existence for the rest of my life.

I bounced between despair and too much trying (horse riding, for example ... !!!??? - I ask you).

With the help of people here and consistent support I feel ready to move forward again with illness in the background instead of to the fore.

I am wirting this to let you all know how very grateful I am.

Take good care everybody.

:love: :love: :love: :love: :love:

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570 Posts
Alwin I am so pleased - you know I was worried about you missy! :wink2:

It sounds like you had a good appointment and a very frank chat with the doctor. I can relate to alot of your experiences. The Plaq started working for me at around 9-10 months and it has been a life saver for me.

I also stopped sleeping through the day and got back into the gym. That has changed recently (and temporarily I hope) due to my recent flare.

Don't worry about the forgetfulness, it can work to our advantage at times! Are you blonde at Hubby reckons it's been confirmed that I'm medically blonde on the inside :lol:

This lupie thing is a constant learning curve for us all but we never quite seem to get to the exam stage :hehe:

Lots'a'luv, :flower2:

Pam xxx

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484 Posts
Discussion Starter · #5 ·
Thank you very, very much.

No Pam. I cannot be blonde on the inside cos my sister is blond all the way through and we are chalk and cheese.

I am an auburn head that is sometimes an artificial brown and sometimes an artificial RED (And I do mean RED!!) head.

I don't understand why cos I've never thought about it, but if I am very happy and up I tend to go red and if I'm a bit fed up I go brown.

Internally I can surpass all known blonds with knobs on. As far as the memory is concerned I reckon the bit of my brain that is supposed to remember stuff is (internally) 102 years old and doesn't know or care.

I'm sorry you are flaring at the moment, Pam, and I hope you can quietly sneak back into the gym soon. Flaring is something I will no doubt experience again in time, but I am still considering the gym. Another month, and I think I'll give it a go. It is the most stupid superstitious thing, but I keep thinking I can creep up behind these conditions and 'sneak a do' at things without re-awakening it. Perhaps I do have a few blondie genes!

I hardly dare hope I will be able to do it without any repercussions, but I will give it a go. You certainly appreciate feeling well so much more when you have struggled for sustained periods, but mistakes are, I think, making me more realistic than I was at the outset.

Thank you neon girl and Maia too - much appreciated.

Be well everybody.


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286 Posts
Hi Alwin,

I think I can speak for all and say your post was one of the most uplifting, reassuring posts of all time! It is so nice to hear good news...your doctor sounds like a real gem.

So glad you are feeling well and getting back to all of the things you enjoy, I hope this good health trend continues for a long, long time!

Take care and be well,

· Registered
545 Posts

That's wonderful to hear,I am so delighted for you & I hope your improved health continues for a long time to come!!

I think it's very sensible to continue on the plaquenil alwin although I understand it's a bit disheartening because you were hoping there had been a mistake with your diagnosis.:sad:
I do think that we all feel a bit like that at some point,human nature I suspect :) or just plain old wishful thinking :rolleyes:

Thanks for inspiring us alwin,it really does help!
and please don't be a stranger now,I always enjoy reading your posts :)

take care,bye for now
karen x

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6,939 Posts
H Alwin,

I'm so glad to hear that you are doing so well and that it seems to be staying that way :excited: .

I still have a little way to go. Although I still do feel much better I have had another two weeks of being extraordinarily tired again. My GP thinks I did "too much" because I felt better. I don't feel I did as my main "effort" was being able to stay awake every day all day.

I was, of course, going to the gym too but I had to cut that out last week just to get back on an even keel.

I'll start again this coming week as I don't think it was actally doing me any harm as it is still very very gentle.

It all leaves me a little worried about work as I still have real difficulties getting up in the morning and dealing with people - I don't mean to be funny here. I just find 'managing debates' (which is what I do in the classroom) so concentration intensive as to be utterly exhausting.

I will be trying to change my job so that most of it is translation which means work from home and flexible hours but I don't yet know quite how realistic that is as translation tends to be very irregular.

Anyway, that ramble now over :rotfl: I still want to say that I am really really happy you're doing better. I hope it doesn't mean that you'll stop writing here as I love your posts and think you write very well.


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484 Posts
Discussion Starter · #12 ·
Thanks again.

It is nice so reassuring to feel welcome and to be accepted, despite irregular mental wobbles, etc.


I think knowing how to get the work / exercise / rest balance can be extremely tricky when you are at the stage where you cannot be sure how you will feel even the next day - let alone over the course of a whole week. It is so furstrating not to be able to plan some sort of routine towards gradual improvements like you can when you are well, but simply out of shape.

'Managing debates'? Nope! Even now I would not be able to keep my eyes open for long after doing something where I actually had to both THINK & concentrate for sustained periods. What is more, being in a classroom type environment makes me feel tired and weary even when I enjoy the topic.

I would not be well right now if I had continued to plug away at my 'career' (those are punctuation marks of contempt). I know I made a mistake becoming a gardener in terms of my physical abilities, but from a psychological point of view it was perfect. To be free of feeling you are letting people down removes a lot of stress / guilt. I protect my psychological health first and foremost. A few of my friends call me 'the mental' so I need strength to appear 'normal' at the best of times. I think they are short of English and mean 'eccentric' . Either that or I have so little insight I really am off my trolley. But I don't reckon so, and can't be shifted in my beliefs.

The resting did my head in, but now I am comfortable with resting when I want to, and I never kick myself in the head if I don't want to swim. Even though I feel well I will be resting at the slightest hint of trouble. These illnesses have scared the bejesus out of me and shook my very core.

Please continue to rest when you know you need to - it is the most therapeutic thing that only you can control. Sometimes I can get away with 30 mins shut eye if I set the alarm clock (otherwise I would sleep straight through until the night and be on here at 03.00hrs moaning).

It is extremely difficult, risky and brave to change your job. It's such a major life changing decision. Unfortunately, I think most of us only get round to it when forced. The financial implications alone can be dire. And all too often we think we 'are' our jobs - that all the other things we 'are' have less value. It's a crippling deceit, but it can take a long time to come to terms with.

I have been fortunate in that I have met quite a few other small time gardeners and we are all stony broke much of the time. This is good for me because it means my recently formed friendships put no pressure on me to conform to any kind of life style that I cannnot afford.

I do not need nice clothes to go to work, and it is accpetable to drive an old banger. It is also ok to scrounge and swap things - from plants to building materials, computers, and logs to burn.

I feel as though I have ceased to be a citizen, and my children now call me 'the hippy'. But I feel content. I never really wanted to join in with all the materialistic stuff you can get sucked into. I feel I am now living my life the way I always wanted to, I just had not realised (hope that makes sense) who I really was. I had invested years and years in a work persona. Would never dye my hair green cos I'd lose my job. Would not wear what I liked cos I might lose my job. Had to rein in my natural desire to swear like a trouper when upset (better than crying) cos I might lose my job.

What happened? I scrunched everything up inside myself and strode round like some up-tight seething blob of pent up fury making my muscles (especially my arms) scream with the pain of holding everything in. What a state to get into. I thought I was being 'professional'. I was an explosion waiting to happen.

Even my yoga teacher and his wife live in something close to poverty. But they are so pragmatic and grounded.

All of my gardening friends so far are refugees from professional lives - an engineer who now dry stone walls - a computer programmer who is now an odd job man/ gardener / waller - 2 housewives who used to do office jobs. 2 teachers who have taken early retirement, are doing the same horticulture course, and just want to see if they can earn a little pin money.

I am watching their stories unfold with mine. Such special people, but so very lucky.

At the end of the day every last one of us is the SECOND wage earner. We each have the safety net of a hard working and loyal partner. Would I have ever been able to extract myself from my old job were it not for my husband?? Absolutely NOT.

If the translation work is irregular, it may be that something comes along that is regular and part-time and well within your capabilities to be doing in the background to help you to tick over.

I did not think you were being at all funny. Mental work is a different kind of tiredness to physical work. Feeling normal physical tiredness is kind of relaxing and healthy - induces a great night's sleep. Mental tiredness is what it is. As long as you are awake how on earth can you rest your brain?

I do not miss mental tiredness.

Thank you for your good wishes. Take good care

:love: :love: :love:

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