Prednisone/fatigue/blood sugar/diet

[Nomad]

I'm hoping those with experience, medical knowledge or both can help me out.
I'm having some crazy experiences with I suspect my diet and prednisone intake. My health has worsened a little of late....including Sj. Syndrome symptoms...dry mouth in particular.

Background:
We  just moved and the stress was extreme and we moved to an area that is extremely hot..not unusual for it to be 98 degrees outside on any given summer day. All together, it has taken its toll

I was on 20 mgs of prednisone from my previous doctor, but was able to very slowly get it all the way down to 8 mgs due to improvements in blood tests. Top concerns: ITP (low platelets) and Sj. Syndrome.

BUT,  my platelets plummeted when we arrived to our new location and I wasn't feeling well in general. Also, much more dry mouth and dry eyes than I'm accustomed to. Due to other issues, I can't take a lot of prednisone. The local doctor increased it to 15 mgs. My blood test results improved.

At issue:
But I'm now having weird bouts of bad fatigue, sometimes right after I take my prednisone dosage. Also, I've gained weight and when I try to go on a low carb diet, I think this fatigue is worse. So, just now, I made myself a coffee with a half a packet of real sugar (I usually use a substitute) and I think my energy increased a tiny bit.

Does prednisone cause major issues with blood sugar? If so, what foods might I eat to assuage (?) mitigate (?) this extreme fatigue that seems to actually have worsened with my increase in prednisone dosage? This is NOT typical. I usually feel better when increasing my prednisone and this is why I strongly suspect that it has to do with attempting to diet and taking prednisone at the same time. I'm not doing anything extreme. Eating in a healthy manner actually. Should I eat protein with all my meals? Should I eat a diet conducive to someone with blood sugar issues? I'm baffeled. This is so not typical. I'm use to any increases in prednisone simply making me feel better...period.

Thank you.

[trc1962]

I have found it helps me to eat snacks throughout the day that are balanced - a carb and a protein. I always gain weight on prednisone no matter what, so I try to just eat well and make sure my carbs are complex - whole grain. I don't get the fatigue though, so maybe ask your dr. You have been through a lot of stress and change and the heat would be awful to deal with also )especially if it is humid). I wish you well.

[Nomad]

Thank you!
I think my potassium could be low too.

[SjoGirl]

Do you sweat a lot? Even if not your sodium levels could be low. It's really critical to get those checked because low sodium can lead to heart issues or worse. FYI eating salt doesn't always help, sometimes you need an IV infusion to get levels back up.

As for weight gain, I have maybe known only one person who didn't gain weight on steriods. It's terrible I know, makes you feel worse when you already feel bad.

Here's hoping  you find some answers and soon.

[irish]

I think it would be wise for you to see the doc and have your AIC checked and possibly talk with a dietician. Yes, the blood sugar can go up with prednisone and that is one of the side effects. I have never heard of anyone having fatigue after they take prednisone. Is it possible that you are over thinking some of the issues. I know where you are coming from as we all have so many things that happen to us from meds.

I have been on prednisone since 2005 and at the highest dose was on 20 mgm a day for way too long. I know that I have prednisone dependent as I have tried to taper off so many times and get in trouble with increased symptoms. Right now I am on 10 one day and 15 mgm the next alternating. The goal is to get back down to 10 mgm every other day. With the blood sugar issues you are sort of playing in the dark trying to decrease your carbs and then eat protein, etc as you haven't had your AIC checked nor have you been checking your blood sugars routinely.

I have been diabetic since 2009 (probably kick started by prednisone, buuut, it runs in my family and my sister has been diabetic longer than I am and never took prednisone. I have learned what my body can tolerate and how it is going to reactm, most of the time, until it does something unexpected. I am on Metformin 3 times a day.

You have had a lot of stress in your life and that will really affect your health and flares plus it can also affect the blood sugar. I think you will quit worrying so much if you would see the doc and share your concerns with him plus get some education. As far as fatuge, oh my gosh, I think I will die from it but so far I haven't so life keeps on spinning.Fatigue and autoimmune go hand in hand. Good luck Irish

[Nomad]

I'm seeing the doc (GP) tomorrow.
A1c?
I'll ask.
I'm telling you this fatigue is freaky.

[gurs]

I been on steriods for years.....about 15mg daily for at least 6 years, prior to that I was on 10mg for 10 years. I never gained weight on it, I think I have an underlying thyroid problem that the steriods might help with?, and I also have gastroparesis, which makes me feel full most of the time. My face is fat though...along with all the other nasty steriod side effects. Gosh, wish I could get off these things.

[Nomad]

Late last night had symptoms of sinus infection.
This morning definitely had sinus infection.
So maybe that was part of the problem.
Doc put me on antibiotics.
Fortunately I haven't had one for perhaps nine months.
Ordered many tests including the A1c
Gurs...Yikes! Be careful about osteoporosis!
I also have been having difficult yeast infections.
Just crazy stuff and I'm grouchy!
Many thanks everyone!

[Carolina]

Dearest Nomad,

I don't have many answers, but I have lots of similar issues.  Not so much blood sugar issues.  Is that the glucose reading, or something else?, My last glucose measure  bounced from 92 to 123 in two days!  Is that what you are talking about?  I am not diabetic, but that change from Wednesday to Thursday seems odd.  I did notice that I had a glucose level of 182 last year, and no doctor commented on it.
So maybe that's not the blood sugar you're talking about.

I have had fungus in my mouth (thrush) and fatigue. I have been so much drier and my mouth has been terrible, which is why I think I got thrush.   I've never ever had thrush before.

I've been taking about 2mg a day of Medrol, which is slightly stronger than prednisone.

4 mg medrol = 5 mg prednisone is the relationship.

Because the skin on my arms is fragile and my veins are also more fragile, my Immunologist wants me to reduce my Medrol.  And she dropped it from one month to the next by 35%! 

As a result I 'crashed and burned' after my IVIG in May (which is why I take Medrol regularly and have for 3.5 years).  So I notified her that I was increasing my Medrol so the reduction was only 10% not 35%.

At the same time I developed IBS in late May!  at 75 after never having a problem.  I adopted the FODMAP food elimination diet and my IBS calmed down.  Honestly, sometimes I feel like I'm on a roller coaster.  But at least the weird shaking and sudden collapsing, which started in April 2016 seems to have gone as suddenly as it started.

We did some traveling in June, including a trip to Germany, and I HAD to increased the Medrol dosage, sometimes to as much as 12-14 mg a day.  Otherwise I would have been in so much pain from inflammation due to the stress of traveling, time changes, high temperatures and NO AC in the hotel, etc.

Now things have calmed down and I have resumed the level of Medrol I designed as part of the 10% reduction.

I will stay on this plan until I see my Immunologist again in three weeks. 

You know, we are just about the most resilient and the strongest people I know.  We have so MANY things going on, and never know when another 'thing' will pop up.  And these things are no fun at all, painful, depressing, and disabling.  And yet we carry on.

Amazing.

Regards, Elaine

[gurs]

Im much like Elaine with my love/hate medrol relationship. I had to start this 4-6mg day because of a bad reaction to an IVIG treatment. When I tried to stop, felt horrible. Tried several times to wean off of it, but there was no other options...still isnt.

Now, I suffer with osteoporosis, thin skin, fragile veins, lost more hair, fat face...etc..the list goes on on the damage they have done. I feel horrible now, cant imagine if I didnt have and steriods at all  in my system. You have to outweigh the risks. Of course any doctor doesnt want us to be on steriods, but they dont live with this dreaded disease either and dont know what we deal with. Its a quality of life issue. Im still trying to wean off, but now, with the horrible allergy season, doubt it will be for a few months.

[Deb 27]

Maybe you were feeling bad from the sinus infection? Prednisone can certainly cause a host of reactions. Irish has a great point. If your family has a history of diabetes, prednisone could cause your blood sugars to go up, sometimes even into the diabetic range. It does me and that's why I can't take it. My BS will go up to almost 300. You could always get a cheap meter at Wal Mart and check your blood sugars to be sure. The A1c is a 3 month average of your blood sugars. If the sugars just started spiking in the last two weeks, it might not show a major increase just yet in the A1c.

BTW, Elaine, a fluctuation of 92 to 123 isn't much. That's fairly normal for your BS to fluctuate that much. The pre diabetic range for random glucose is 140-199. For fasting, pre diabetes is 100-125.
Diabetic ranges are 126 or greater fasting and 200 or above for random blood sugars. The A1c is actually a more comprehensive test for diabetes since it is the 3 month average.

Often, your blood sugars go back to normal when the prednisone is stopped. I just wish I could take it-:(((

[irish]

The AIC is the Glycosated Hemoglobin blood test that checks the blood sugar. The sugar attaches itself to the red blood cells and because the red cells live for three months the test is reliable for a blood sugar average the past 3 months.

Also, our blood sugars bounce all over the place. It can be 90 one minute and 30 minutes later be 150. Blood sugars depend on the amount of food we eat and whether the food is fat, carbohydrate or sugar. These 3 food types are all broken down in the body and eventually become sugars.

We can load up with ice cream or high sugar foods that can send our blood sugars quite high and the body with manage to send out the insulin to help metabolize it. However, it is not good for our bodies to fill up on all that sugar-----like we have all down this for years. Become a diabetic and your days of sugar gluttony and any other type of over eating need to come to a halt. As a diabetic I can tell you that it really sucks not to be able to pig out like I used to. Irish