I don't need to repeat my full history for you all I'm sure. I've been on MMF since July - got up to full dosage of 3g a day by end of August. I wasn't sure at last Rheumy and Dermy appt if i was seeing an improvement and was a little disheartened by it all. But I am pleased to say that I think it is working and has just taken a lot longer than I expected.
I haven't had a headache for over 2 months. Which is huge for me. The diarrhoea is under control - although I still have to be careful with the amount of fruit and veg I have a day. I still have to nap - but it hasn't been every day - but generally my energy levels are vastly improved.
I have been struggling with a nasty barking cough and cold since before Christmas. My husband had it for 3 weeks and was quite poorly. I don't know how he made it into work some days. The cough has given me sleepless nights and generally made me feel tired. But it's Christmas and with 3 children, the build up with school events and concerts and general preparation - it is a very busy time and hardly surprising I feel a little under the weather.
But the last few days I have finally thought, "Yes, I am beating this". The cough is virtually gone and my nose dried up.
Then this morning, I awake and feel like I'm at the start of a cold again. Nose is running like a tap and I can feel it behind my eyes again.
When I looked at my health diary last night, on 17th November, I wrote that I had been fighting a cold for a month.
It seems to be something I just can't quite shake off.
But the lupus, on the whole, seems to be under control. I think I've had a little hair loss recently, some sores on my head, in my nose, and in and behind my ears - but generally much much better than before.
What to do? If anything. Do I just have to live with the cold? Is this normal?
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Wendy39
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Am glad of this update, Wendy...some good news 👍👍👍👍
Re your ?s:
Do you feel as if you may have developed a secondary bacterial respiratory infection to the original cold virus?
What were your WBC & lymphocyte & neutrophil blood tests results before MMF and what are they now?
Has your hospital clinic agreed shared guidelines bloods monitoring protocols with your gp?
I ask because my shared guidelines mean me + my gp + my hospital clinic all liaise over questions like the ones you're asking...that's how we agree what actions to take
these secondary infections are always a risk with lupus, even before taking immunosuppressants. Once we take meds like pred & mmf we are even more at risk of these infections. And if our WBC etc results are lowish, we're even more at risk. Sorry: you probably know all this. I don't think you're already on antibiotics....if not, try to get a nasal passage swab & a sputum sample analysed if/before you do start so the results are documented
Thanks for your reply. I have been having monthly bloods since July but have no idea what the levels are or what they are testing apart from liver and kidney function? The nurse that does them most of the time has never even heard of MMF and asks me what bloods I need???? So unfortunately I have no idea what my WBC is pre MMF and post. I'm not on antibiotics. I did take a short - 3 days from memory - course back in October for a bladder infection. But otherwise no. I guess I need to contact my GP surgery. My Dermy and Rheumy and GP all seem to ahve access to my bloods and they check the results when I ask who is supposed to be checking them. But since the Dermy left I have no idea who is ultimately responsible for checking them??
Anyway, thanks for the tips, I'll know what to ask for now.
Just had my gastro appt this afternoon...am going to post about it now...am "doing pretty good" thanks (especially now gastroenterology is taking me seriously 😉)
Morning. I called at the doctors surgery at 9am this morning and they said there were no appts left, but when I explained they said come in at 3.35pm. It's one of those sit and wait surgeries, and I'll have to pick the children up from school and rush over there, they will have to come with me, will probably be late but those sessions always run late too.
Anyway, whilst I was there this morning, I asked for my last blood test results to be printed off. They are charging £1 a sheet now and my results were split on two pages. So £2. I'll ask the doctor to print the previous ones off later on.
So I've never seen these before and don't understand all of it.
But Total White Cell Count - 5.0 10*9/L (4.0-11.0). I'm guessing that 4-11 is the normal range and I'm 5. is that OK?
Lymphocyte count 1.4 10*9/L (1.0-4.5)
Neutrophil count 2.4 10*9/L (1.7-7.5)
I will obviously ask GP later - not sure which one it will be - but do you have any thoughts? I don't know what these are for, except for the White Blood Cell Count.
Interestingly, my Haemarocrit level remains at 0.38 L/L (0.37-0.47) which is was in the summer of 2014 when my Rheumy prescribed iron tablets as borderline aneamia and I was tired, despite the hydroxy. She said a woman of my age who was still menstruating would struggle with those levels. So I take 1 x Ferrous Fumarate 210mg a day. But it appears that the level hasn't increased???
Glad you got these results. Many of us do like to keep personal records of our results. In my case I must do this because my lupus clinic gives us booklets to record results in...we're expected to bring our booklet to clinic each time. This is all part of the NHS shared care Guidelines agreed between my gp & my lupus clinic when I began myco and started the regular monthly bloods tests monitoring. My gp surgery doesn't charge me for my bloods print outs, phew😏
I couldn't make head or tail of the significance of my blood results until I forced myself to research the subject online...it's been a steep learning curve, but I now pretty much understand them. Part of this understanding is knowing what "my normal range" is. And after keeping my little booklet up to date for several years, I do understand this 😉
The results you've given above are all in normal range & probably just fine. But please do ask your medics for their thoughts...and especially as whether these results are similar to those in previous tests. Persistent infections can relate to these sort of elements being below range. This is why I only asked about these elements
Heamatocrit fascinates me! Mine has consistently been below range for ever, but all my consultants tell me that's ok. I now figure this is "my normal range" of heamatocrit! 🤗
Morning. I called at the doctors surgery at 9am this morning and they said there were no appts left, but when I explained they said come in at 3.35pm. It's one of those sit and wait surgeries, and I'll have to pick the children up from school and rush over there, they will have to come with me, will probably be late but those sessions always run late too.
Anyway, whilst I was there this morning, I asked for my last blood test results to be printed off. They are charging £1 a sheet now and my results were split on two pages. So £2. I'll ask the doctor to print the previous ones off later on.
So I've never seen these before and don't understand all of it.
But Total White Cell Count - 5.0 10*9/L (4.0-11.0). I'm guessing that 4-11 is the normal range and I'm 5. is that OK?
Lymphocyte count 1.4 10*9/L (1.0-4.5)
Neutrophil count 2.4 10*9/L (1.7-7.5)
I will obviously ask GP later - not sure which one it will be - but do you have any thoughts? I don't know what these are for, except for the White Blood Cell Count.
Interestingly, my Haemarocrit level remains at 0.38 L/L (0.37-0.47) which is was in the summer of 2014 when my Rheumy prescribed iron tablets as borderline aneamia and I was tired, despite the hydroxy. She said a woman of my age who was still menstruating would struggle with those levels. So I take 1 x Ferrous Fumarate 210mg a day. But it appears that the level hasn't increased???
Agree with Coco, in the past when I have had a cough for more than 2 weeks I usually go see the GP so they can have a listen to my lungs - past few times required antibiotics, although I am more careful about staying away from contagious people now, so fortunately this is not a regular thing for me. (My WBC are usually a little low or borderline normal)
Thank you for your reply and advice. It's difficult for me to stay away from ill people, my husband was porrly before Christmas and we have 3 children at school age, 12, 11 & 8, so virtually impossible for me to avoid germs. I have seen GP now and will reply to all below. Thanks again.
I struck gold today. It was a sit and wait surgery, so unsure who i was seeing but it was my fav GP. The one who i saw re all the heamorrhoid and diarrhoea etc last time.
So firstly said, having lupus you are more prone to infections.
Then I mentioned my bloods and she said they were all fine.
She checked my chest and temp etc. All good.
She then got out one of her reference books and checked out what it said about MMF.
She then said, that the MMF too can make you more susceptible to infections and if they re-occur to carry out a blood test on a something serum, re my immunity??? I can't remember what word she used.
So I've booked that blood test for Tuesday morning.
She also gave me a prescription for amoxicillin antibiotics to keep at home, in case the cold gets worse or I feel it's gone onto my chest - then get the antibiotics - she said just in case I get worse over the weekend.
Fingers crossed the blood tests will be back before I see the GP pretending to be a Dermy I think around 21st January and she asked for the results to be CC'ed to him too.
We discussed the fact that I thought the MMF was finally doing its' job and the final symptoms diarrhoea and headaches were under control. But I am on max dosage of 3g a day and maybe - depending on bloods etc - we need to think about reducing it and finding the right balance for me.
So good result.
Fingers crossed this doesn't get any worse.
Thanks you all for your replies and advice. I'm very grateful. There's always something to learn isn't there!
Hi been back to work, good to hear your getting some help with the cold symptoms, some really good feedback from fellow lilies....just wanted to wish you well...next week full week been tired lately see how we go...😊ML
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