How much sleep do we need?

Your landlord needs to provide adequate alternative heating at the very least, or to pay for you to stay in a hotel. I think we’re having the same weather, it’s bitter just now, and unless things have changed considerably, I’m guessing you won’t be going on a 4 mile run to warm up. Your landlord can’t just leave things like this for 3 days.

The landlord is the local council. They have provided a fan heater (woohoo), but having that on in one room isn’t the same as having the entire house like a furnace, which I normally do. The fact my shower runs from the boiler is the real problem. I’m calling on friends so I can have a shower! Bloods taken tomorrow too - never rains but it pours.

I have written to the council - the issue of having the boiler serviced in itself needed complaints from me because it hadn’t been done. So at least I have someone to liaise with. But everyone had gone home by the time I knew what was happening today. The worst thing, to be honest, is the upheaval and the break from normal routine. I really struggle with it because of the bipolar. I think I’m going to ask the council if I can have a boiler service again in July and then yearly from then. If this happens again and its the summer it won’t matter! I’ll even pay for the extra service myself if they want!

Oh darinfan - that’s just pants. The council need to run your shower from an immersion too. That way you’ll have hot water regardless of the boiler issues. And ask them today what you’re supposed to do with no hot water for three days?

The council has some statutory obligations in this regard. Damned if I can remember the ins & outs right now, plus having rights and actually getting them acted on promptly are two different things as we all know.

That’s a good idea about a July service. It would help to back your request up with letters from your consultants.

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Rang up today, and apparently the repair should take place tomorrow afternoon - so much for me going out on my birthday!

Had first blood test today since I’ve been on the biologics - I’m going to be cheeky tomorrow and ring up rheumatology to see if they have results. Blood tests send my bipolar through the roof, so I just want to know that I can still keep taking the injections, especially as these ones are actually working for the most part. I’ll be gutted if I have to stop them. That said, I’ve been looking back through threads on here, and it doesn’t seem that bloods are a huge problem for people on Enbrel/Benapali, despite a couple of scares about WBC.

I agree, I’ve been on Humira for 3 years nearly and the only hiccups with blood tests have been slightly low neutrophils which soon returned to normal.
Is it that cheeky of you to ask for results ASAP? You have such a good angle on how your bipolar affects you, seems only fair that docs should take advantage of your insights to help keep your mood on an even keel.

I don’t know, to be honest, Sybil. I don’t particularly like asking for special treatment - although I certainly called the disabled card when the boiler was switched off! Didn’t do me much good, though! Results will go to hospital first and then the GP. I have an appt there for Monday to get them, but if I can get them over the phone, so much the better. To be honest, I haven’t caught anything since I’ve been on the biologics, and so I’m assuming that is a very good sign. Even the normal mouth ulcers aren’t as bad as they normally are, and I’ve had them forty years nearly. I think I’m more worried because it’s the first blood test on them, and because it several months since the last one. They seem less worrying when you have them every week!

I like GETTING special treatment, though!!

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Oh @darinfan, if you can get special treatment, always ask for special treatment. There’s simply nothing wrong with that. Really. We’re all needing of special treatment. And happy birthday for Friday. That in itself deserves to be called ‘special’ so get the results just because of that if you like and just have a better day.

Well, I rang the hospital. Liver/kidneys are fine. WBC is low, and neutrophils are low. Got to be retested in a month. If they get any lower then I have to come off the meds. I’m hoping it doesn’t come to that. Not really what I wanted to hear. Not really concerned about the WBC as it’s only a fraction lower than normal (it’s 3.9 and I have a feeling mine is at the low end anyway normally). But the neutrophils are a cause for concern, apparently, at 1.76. Here’s hoping they start building up again over the next month! Oddly, I haven’t had any bugs or infections.

Yes, it’s the neutrophils. My WBCs are always low, too. At first Rheumy scared me and said if they go down any further we’d have to stop the Enbrel…but when they went down further he said no worries—same as your doc, it’s the neutrophils they watch more closely.

Did yours go back up?

My WBCs flunctuate between slightly below normal to the low end of normal. My neutrophils have always been in the normal range. I think they do have to be extremely low to be concerned, but I heard that somewhere and not sure it’s reliable info.

I just hope yours go up so you don’t need to worry. I wonder if there’s anything you can do to make them go up besides going off meds?

I just checked My Chart to see what my neutrophils have been…6/1/15 they were at 1.7 (slightly below normal). 2 months later they were at 5!!! A few months after that, they were 2.2. Since 2015 they were usually in the low 2s, except once they were at 3.6…most recently they were at 2.2…

Hopefully, this will ease your mind and give you a reason to be optimistic. I honestly couldn’t tell you why mine went from 1.7 to 5 in 2 months time, but why they’ve pretty much stayed at low normal since then…also, FYI I’ve been in Enbrel throughout that time.

Maybe our team scientist can explain this for us?

I just found this when I googled why do neutrophils functuate. The site was www.ncbi.nlm.nih.gov

“Patients with severe congenital neutropenia, particularly those who respond poorly to G-CSF, have a risk of eventually developing myelodysplastic syndromes (MDS) or acute myeloid leukemia (AML) and require monitoring for this complication, which can also occur without G-CSF therapy. Patients with cyclic, idiopathic and autoimmune neutropenia have virtually no risk of evolving to MDS or AML.”

The second sentence pertains to us with our autoimmune neutropenia (if that’s what our chronic low neutrophils is called).

I just realized that in August of 2015 I had strep and was treated with penicillin…I’m wondering if the strep or the penicillin caused my neutrophils to go up to 5 at that same time!!!

Thanks for that. It seems relatively normal for them to be low after starting the drug then, which is good (for me). I’ve read that they go up with infections - so perhaps I shall try and catch a cold before the next blood test! :wink: I got worried when I started reading the first part of your second message, but then got to the end and all was well! Thanks for the info!

:wink:
Let’s hope they go up without the bother of any kind of virus or infection! I sure hope you don’t have to stop the meds!

Me too. I would be gutted.

Yep, I can understand your worry. I’ve got a repeat in a couple of weeks for the same reason. I’ve had it a few times before - I reckon about 1 in 6 comes back low for me - so hopefully that’s all it is for you.