Does anyone else have SLE and Type 1 diabetes?- struggling big time!

[heidieidi]

Hi!

I am just wondering if anyone else has SLE and Type 1 diabetes and if so, how do you cope with both?

I'm 27 and have SLE (been diagnosed 1 yr, mostly skin and joint involvement with photosensitivity) and type 1 very brittle diabetes (diagnosed 11 yrs) and am on an insulin pump. I'm really struggling to keep on top of my sugars because the least little thing can cause them to sky rocket and I've been having more and more episodes of ketones. I think the problem at the moment is that I'm also in a massive lupus flare currently-swollen glands, sore throats, even more pain, even more exhaustion and a lot of brain fog and confusion (more so than usual lol).

I'm under the care of a very nice diabetes nurse, but I have heard that having both is not very common, so there's not a whole lot they can tell me. My Pump is brilliant-wouldn't be without that, but I am very conscientious with my diabetes and testing loads every day but still have the massive highs and the massive lows. I'm feeling very down about my health at the mo-there's not very much I can do and feel very alone having both these conditions to contend with. I really want to try swimming, but am so scared about having the hypos when I'm in the pool it puts me off... I'm also on methotrexate and am worried about catching the lurgy from the pool!!

I'd be really interested to hear how other people cope with these 2 debilitating conditions and do you have any tips?

Thank you!

Heidieidi

[annie330]

Hi ya, I have both, diabetes for nearly 19 years and SLE diagnosed in 2008, then also diagnosed with APS and the Rhuemy and neuro disagree about whether I have vasculitis or vasculopathy.

Over the course of my diabetes I have had good times and really hard times when it comes to control, and more recent thinking is now that the other things (although undiagnosed then) and didn't help matters.

This week I am on a DAPNE course, today is the second day, there are 6 of us and whilst the others just have diabetes they have the same problems we do but I understand how frustrated you feel when there doesn't seem to be a reason for the lows or highs. And unfortunately whist all the drs and nurses are good in their own fields they don't cross over and take other stuff into account as they don't know about it. And SLE etc., are different diseases.

I'm trying to get back into exercise too and I do go swimming (I'm on azathioprine). They talked about exercise today and the info they gave was that if you plan the exercise and it is within two hours of eating then you should reduce your insulin dose with that food by half. But I would ask your nurse as with being in a pump exercise should be easier as you can turn the pump off for an hour (thats what they said today), the nurse should be able to give you advise on this. And you have to check check check blood sugars and it will be trial and error on getting it right.

Don't really know what advice to give, I go through the lows and feeling down and I use to exercise regularly but it has fallen by the wayside but I am determined to get back into it even a little bit at a time. I went to the gym last night and Sunday and whilst I didn't do much it was something. I would suggest you try a swim (but check re methotrexate as I dont know about this med), take it easy don't do too many lengths, check your blood sugar is ok before you start and keep some fast acting glucose on pool side (like , ceck blood sugars after exercise and monitor them as they can drop off exercise.

Most importantly keep smiling and try not to get too down (I know this is easier said than done sometimes)

Louise

[Lupo30]

Hi

I have had type 1 for 24 years now and, like you, am on the insulin pump. Think I would be dead if I didn't have it! You are right, it is not that common to have lupus and type 1, in fact my consultant for lupus at the time, who was the specialist for my area, hadn't ever met anyone with both. Have you been tested for coeliac disease? Just a thought, as my sugars always went very high and low, with no real in between when I was undiagnosed with that. I didn't really have any of the symptoms you usually have with coeliac disease, I was a sort of silent coeliac symptom wise, except for the blood sugar problems.

I also find terrible problems when I use steriods and have also found that my sugars need adjusting with immunosuppresants, however, I haven't tried methotrexate, just azathioprine and cellcept, neither improved anything. However, the diabetes said you shouldn't need adjustment with immunosuppresants but I disagree.

However, if you are on immunosuppresants you are probably going to be more susceptible to illnesses, together with the ones you already have, which may be why your blood sugars are going up and down. I, like you, have to test all the time, I'm surprised I've got any fingers left! Perhaps they could put you on a glucose monitoring system to tie in with your pump to take some of the stress of you and then this should adjust your insulin accordingly - however, they may be thinking of this already.

I really hope you get on well. I really feel that my life has been changed by these illnesses, but I suppose it builds our character. Let us all know how you get on.

[heidieidi]

Thanks for your advice Louise and Lupo30!

Hi Louise, I did the dafne course about 8 yrs ago and found it invaluable... I found it really helpful to have the one-one and group in-put on the course, and just to be around people who know what it's like to have diabetes. The carb counting is brilliant! I've asked to go on a refresher course but apparently there's a massive waiting list and other people that haven't done it yet need to do it which is fair enough! I think I'd like to try the gentle swimming, either that or start pilates again. that's really true, they don't seem to know about how other conditions affect the diabetes hope you find the dafne course really helpful too!

Hi Lupo30, I haven't been tested for coeliac recently, so might be worth asking! I agree, the pump is a lifesaver! I had to decline steroids the other day as my sugars have been terrible and didn't want to risk ketoacidosis again! That might be worth thinking about again-I tried the continuous glucose testing for a few days about 18 months ago but when we plugged it in at the hospital the thingy had lost all the data!

Are you on a medtronic pump? you may have heard of it already but there's a piece of software available called the Carelink USB which allows your pump to talk to this piece of software which you can buy and it uploads all your sugars, boluses, hypos, carb intake etc and allows you to view the patterns and trends over the course of days and weeks. I saw the diabetes nurse in the week and she gave the carelink thing to me and she can now view my results remotely and give me advice with what I need to change and look at! I have yet to hear from her about it, but it seems that it could really help to tweak the control and get it the best we can with having the lupus too.

All the best

[Othlon]

I only have a short reply, and I'd be lying if I said I read all of this thread. I am just deeply relieved I am not alone with lupus and type1 (and a few others but these are my main problems). It feels lonely in t1 groups who a vast majority do not deal with other illness. Same goes for lupus groups, while often dealing with secondary illnesses they are very rarely diabetic!

[Chronicwarrior]

I have diabetes type one diagnosed in 1979 (( I am 40 years old now)...and started having lupus symptoms when I was about 11 years old ....several lupus organ involvement ...diagnosed sle in 2016...(was only kept alive because I had islet cell transplants) and put on cellcept for a few years before quitting them...sorry confusing to read this I know...to make a long story short...I have lupus and diabetes type one and my diabetes has always been severe...

[stellybell]

hey sweetheart, I have SLE, and just found out that my beautiful grandson has type 1 diabetes, cant help feeling responisible. hope you are doing well, please say a prayer for us as we all will for you, maybe a cure soon!