[ALWIN]

Hi all

I have received a letter from my NHS consultant. I see her at the end of the month.

The letter tells me most of my blood results taken 3 months ago are normal, showing no evidence of lupus.

It says there are low levels of antiphospholipids, but that these are 'probably normal'.

I am not sure what this means. Does it look like I have been mis-diagnosed?

I know I have tried to broach this before, but reading back through medical letters, etc. I see no previous positive blood test for lupus. It was diagnosed at the same time as Hughes and Sjogrens, and think I was really diagnosed with mild lupus on symptoms.

It would be wonderful to have a diagnosis removed.

I am very well, and less tired these days.

If the consultant does not think I have lupus at all I think this would be reasonable, since there is such an overlap with the other conditions.

However, I am a little concerned that I might be feeling so well because I have been taking Plaquenil, so I do not really want to be taken off it. It has taken a long time to work and the side-effects are long gone. I do not want to go backwards because I feel I am getting my life back together with less resting and little pain.

If she does not think it is lupus, am I likely to be taken off the Plaquenil, or might I still take it to help with the other things?

If she thinks slightly elevated antiphospholipids are 'normal for me', is it even more likely that I will be taken off them, or does Plaquenil not help with Hughes anyway?

My drugs regime is down to Plaquenil 400mg, Aspirin, betablocker. I do not require ANY anti-inflammatories / analgesia and have not for several weeks, but I have a small supply and a repeat prescription, so I feel secure on that count.

Up to and before Christmas I was eating them 4-6 hourly, and still uncomfortable, but they did help. When I took them properly and regularly.

What ever she says I am going to try really hard to convince her to allow me to continue to take Plaquenil for a little longer at least.

I guess I'm looking for ideas on what to expect.

I don't want or like the diagnosis, but I do not want to go back to constant pain and dragging tiredness, etc. either.

Good grief, I do hope this makes some sort of sense.

 

[Maia]

It's great to see you are feeling so well again!

If you've been diagnosed with Sjorgens - then that alone is reason enough to stay on the Plaquenil. If you go to the appointment and they suggest taking you off Plaquenil, then this would be a good point to make to stay on it.
I can understand the weariness about going off a medication that may have made a big difference in feeling well. Lupus is just one of many different things it is prescribed for though... so even if you were never formally diagnosed with lupus, doesn't mean it isn't still an appropriate medication.

Stay well!

 

[ALWIN]

Thank you very much Maia,

The diagnosis from London Bridge hosp was Antiphospholipid Syndrome, Sjogren's Syndrome and then the exact words were ... 'I think she probably does have mild lupus' followed by a list of signs and symptoms.

I am so pleased that Plaquenil is appropriate for Sjogrens.

I may be getting concerned for no reason, but I do feel well, and I do treasure the feeling, and I don't want anything to upset things.

Just feeling a bit unsure about everything.

And thanks again - I honestly am feeling better than I have in about 2 years. And I was rough on and off for many years, really. I only sought help when there seemed t be no let up, and I cannot remember such a long period of being migraine and other aches free, never mind having some energy. I cannot remember when I last felt 'fluey' - it's at least before Christmas.

It is all good stuff and I want to keep it.

I am sorry for being such a bore to everybody who is very poorly. Thank you for putting up with me.

Take good care

 

[lin]

Alwin your not a boar hun, and you know bloods can come back normal,
mine do at times, even when i feel yuk,
so whats that mean, i havnt got anything too.......... if that is true then surly i could come of the 15 meds then,

you take care, aand im pleased your feeling so well make the most of it, sending you hugs Lin xxxxxxxxxxxxxx

 

[Katharine]

Hi Alwin,

You are not a bore at all, it is great to hear you are doing so well and I think we can all identify with worries about being taken off medication. Possibly because in many cases we waited so long for a diagnosis and were faced with so many sceptical doctors beforehand that we kind of have this weird feeling they might suddenly go back to not believing anything is wrong!

My last bloods also came back pretty near normal. My rheumy was delighted but certainly didn't mention coming off any medication (except continuing my pred taper).

I will keep hoping that we both continue to do so well and that you can get back to loads of gardening and me back to aikido and throwing young men around :lol:

Katharine

 

[helloos]

Hi Alwin

Could it be that they are meaning Lupus is ins't showing as active according to your blood work?

I would be confused too. I guess at your next appointment ask that question and I think they would want to keep you on the medication since you have improved.

Let us know how you make out.

Good luck and cotinue to feel better !

 

[ALWIN]

Thank you for the reassurance lin.

Katharine :lol: There are far better things to do with young men than throw them about! :rotfl:

Thank you Paula - I'm glad there are others who would feel a bit confused.

I will ask lots of questions. Just hope I don't get rushed in and out.

I am fitting in some gardening. In fact all 6 members of my horticulture group turned up to help with mygarden last week when the tutor was off on a study day. They have helped re-motivate me. They raked leaves, moved my leaf mould bins, turned over some impacted soil and replanted a tree.

I have slowly graded a skip load of stone over a period of weeks so it will be easier to find the right stones when it is good enough weather to start walling work again.

Most of my garden has been bark chipped and it is full of wild primroses, snow drops and budding narcissi and daffodils. Even my bleeding hearts are showing through.

 

[LoopyLoo]

Hi Alwin,

Isn't it funny that when we are ill we are desperate to feel better - yet when we are feeling well we question why? :hehe:

Try not to worry too much about the bloods, mine have been almost perfect since about 3 months into taking the Plaq and I've only ever had one positive ANA test.

The Plaq is clearly helping you in many ways and long may it continue. ixiedust:

Hugz,

Pam xxx

 

[Sage Hen]

Hi Alwin!

I am thrilled, to read your feeling so well. That was such music to my ears.

I must confess, that I felt a pang of envy of your being able to garden, however. :wink2: It is early spring here, and March is when Clematis need pruning..

The little birds are staking out their territories, to set up nest building, and I am still able to enjoy watching them. Isn't nature wonderful?

I pray that you feeling well, is long standing Alwin. Have fun with your spuds..

 

[ALWIN]

I'm so sorry you are not able to garden Sage. :sad:

Thank you for your good wishes.

I too love watching the birds at this time of year. Nature IS truly wonderful. People who don't 'get it' really miss so much.

My spuds are still chitting but I've got my bags ready. Just need a few sprouts and I'll plant them and keep them on front of the window in my cellar until it's a bit less frosty.

I spoke to a chap who sometimes works in a corner shop in town today and he was asking about gardening work. With a bit of luck he might be right for my friend who keeps asking me to partner him, but I feel I have enough on at home and don't want to over do it yet. It is nice earning money from a hobby, but people who want gardeners usually have gardens that are really messy and hard work. They all seem to cultivate brambles and rocks for soil, or they want you to build some giant structure, in my experience.

The two mothers who helped me with bits of my little neglected round last year are enjoying the horticulture course and have been loaned a bit of land that they are busy preparing. They have bought raspberries, blueberries, spuds, beans and all sorts. It is good listeneing to them planning.

Thank you for your prayers - they mean a lot.

Take care

 

[BigSis]

I'm happy you are feeling better Alwin.
Long may it last. You're a good owd gal........as we say in Suffolk.

take care

 

[ALWIN]

Thanks Bigsis

They don't half talk funny where you live!