Advice Needed

[Jampad]

I was diagnosed with GCA at the end of August and started on 60 mg steroids. I have tapered down and will start on 25 mg tomorrow. I had a couple of setbacks which meant I went back to a higher dose for a few days, and then tried alternate doses which worked well. I had an appointment with the GP yesterday to discuss my latest blood test results. What a shock I had. I now have sky-high blood sugar, blood pressure and my kidney function has dropped dramatically. The GP says these are steroid-induced problems. So, I think I need to be off steroids as quickly as possible. So, here is the quandary - do I stick with tapering slowly which suits my body, or do I try to taper more quickly in the hope that it helps the health problems.

[YuliK]

Taper very slowly 👍 no more than 10% at a time.

[Hidden]

Hi jampad, try not to panic too much. You can do bigger drops down to 15mg then slow a bit. Your blood pressure can be controlled by meds for now, as well as salt reduction and increased movement. That will help your kidneys too. At that dose the side effects are reduced. However you need to start a low carb diet ASAP. This will help enormously in terms of bringing your blood sugar down. Metformin is thought to protect the kidneys too and is a common starter drug for a high hbac1. Do you have the numbers for BP and high blood sugar (hba1c)?

As I say don't start to panic too much. Remember its quite possible the pred has saved your sight. So carry on reducing AS LONG AS YOU DON'T HAVE GCA SYMPTOMS. Once at 15mg then you can slow to 10% a month. Again as long as you have no symptoms.

Here's a couple of links about low carbing.

ditchthecarbs.com/guide-to-...

dietdoctor.com/low-carb

[Jampad in reply to Hidden]

Saved the links so I can read the information slowly. Thanks.

[SnazzyD]

Hello. If you have GCA and you reduce too quickly you could flare and end up going back up to high doses again. There is no better drug than Pred to prevent damaging inflammation. Other drugs like Actemra aren’t necessarily the answer either and in the U.K. you need to have proven refractory disease first.

May I ask what were your set backs? Is it possible you were either being reduced far too fast or it was just withdrawal which can be quite unpleasant or both?

I don’t know your other medical history but did you change your diet when put on Pred? It is really important to reduce carbohydrate intake and for most that means severely. Once sugars are controlled weight doesn’t increase, the diabetes risk reduces and probably the ensuing renal problems too. It seems that the medics don’t tell people this and wonder why they end up diabetic. I certainly wasn’t but this site made me aware early and I haven’t had any problems.

[Jampad in reply to SnazzyD]

I started having trouble chewing again. I got in a panic thinking it was a flare. I started off with vision problems and I`m so scared of losing my sight after having two cornea transplants a few years ago.

[SnazzyD in reply to Jampad]

It’s a tricky one. There are problems that can crop up that are not GCA but it’s working out what is what that is difficult. Jaw problems do come up on the forum. The muscle weakness the rest of your body gets can also occur in the jaw joint which can cause pain all around it due to temporomandibular joint dysfunction. I thought I was having a flare a few times but it was tension in neck muscles (sternocleidomastoid); it had all signs such as pain in the temple, behind the ear, jaw and scalp tenderness. It’s worth ruling these things out which can be done with self examination.

healthline.com/health/stern...

mayoclinic.org/diseases-con...

[SnazzyD]

I forgot to say that Pred makes you retain sodium which keeps fluid in your body which can give you high blood pressure along with fluid retention in the tissues. It also makes you lose potassium so be aware if any blood pressure meds cause that too as some do. I didn’t take potassium supplements because getting the levels right is dicey so I just ate potassium rich foods.

[Devoid]

I have also experienced lots of steroid induced problems, high cholesterol, high blood pressure, and generally not getting on with them but with GCA it isn’t a choice, to get off quickly. I am now on steroids, methotrexate and just started on tocilizumab, having been diagnosed in June any taper down until very recently has caused a flare, or to be honest until the methotrexate I don’t think it was ever fully controlled. I was really against the idea of more medication but I couldn’t get my blood pressure down and I am now on medication for that and statins for the high cholesterol, and hopefully can reduce or discontinue these when I’ve got the steroids to a lower level.

[piglette]

As the others say continue on a slow reduction. If there was any way of tapering more quickly to get off pred we would all be doing it!

[DorsetLady PMRGCAuk volunteer]

Continue reducing slowing.

You will find that as you reduce, the other medical problems will lessen, and probably return to normal when you get down to single figures - in the meantime they can be treated as necessary.

You need the CORRECT level of Pred to protect yourself...and your eye sight - if lost that cannot be remedied- the other issues can!

[Jampad]

Thanks everyone for the replies. It is so helpful to have input from others who know what it is like to try to taper off steroids I`m in the UK so not sure if the numbers are the same, but my blood sugar was 49, my BP 179/99 and my kidney function is eGFR 42. I had blood tests about six months ago and everyhing was normal. I know everyone is right - that I need the steroids but I suppose I was looking for a quick way out. I started being very careful with carbs this morning, so will have to keep it up.

[Hidden in reply to Jampad]

The hba1c is highish but should be relatively easy to reduce with low carb diet. High blood pressure is high! Do you get white coat syndrome too? I bought a monitor and found mine was much lower when I took it myself. At the surgery it went into high territory. Pre Diabetes and steroid induced diabetes can make blood pressure run high and high blood pressure the kidneys. So low carb low salt will help even if you apply it 80% of the time. Your kidney function numbers are stage 3a and the blurb I read says only a minority go on to develop serious kidney disease. That said I would be wanting to get referred or at least monitored properly and an effective management programme outlined. 🌻

[Jampad in reply to Hidden]

Thanks for the reply. The GP has given me 5 mg Amlodopine to treat the BP, It is high at home too - we have a monitor because my husband has kidney failure. Because of that, I have learned a lot about kidney failure over the years so do eat quite a healthy diet of mainly fresh foods, nothing processed and no added salt. I asked for a refferral to a diabetes nurse or a nutritionist but the GP said she needs two high blood sugar readings before she diagnoses diabetes. The GP has ordered blood tests for a month`s time to check all levels. I`m reading about low carb diets as quickly as I can. However I was feeling so discouraged this morning but reading all the helpful replies i`m feeling much more positive. It is amazing to have input from people who understand.

[Hidden in reply to Jampad]

I am glad you are feeling better and with dietary knowledge you should be fine. We all just come along for support and info and it does make a difference. I thought they usually did a fasting glucose test ASAP. When I was diagnosed I gave a test they rang me later that day and I went to the hospital and had a fasting test. But I suspect I was much higher than you hba1c. That was in 2001 so obviously things change across time.

I will say if you start to. Feel really yuk and very fatigued and ill (hard to know if you feel yuk anyway), amlodopidine caused terrible side effects for me. I just went back and got it changed but its worth mentioning as I am not the only one. 🌻

[Jampad in reply to Hidden]

I just asked for the Lanzoprazol to be changed as it gave me diarrhoea. The GP was very helpful, and gave me omeprazole instead. So, I think she would be very open to changing BP med if asked.

[PMRpro Ambassador]

No - you address the problems separately,

First - the renal function - is that on the basis of a single eGFR report? What are the figures? You need 3 consecutive poor results for a meaningful result. eGFR can be affected by a lot of things - being dehydrated, having had steak the night before, other things, It may be related to the BP problem and that needs sorting - medication isn't always bad.

For the BS problem, cut your carbohydrate intake drastically and over the next 3 months your Hba1c will improve. Random BS levels are less significant here, pred makes your liver release random spikes of glucose and all you can do is work on what you can control to reduce the overall average.

Tapering faster will bring the GCA back - and that is far more complicated to manage than the other things. And your sight would be at risk ...

[Hellyowl]

Hi, I don't know your age or physical condition but I have fought high blood pressure for years because BP meds make me feel horrid. I have upped my exercise dramatically and my BP has dropped from around 150/90 to an average of 135/70. I walk the dog every morning. Go to Pilates once a week and try to fit in two gym sessions using the resistance machines. I also work part time. I do get tired but I sleep well. Fingers crossed my blood sugar has stayed ok. I know I bang on about exercise on this forum. I hated it before I had a heart attack followed by GCA followed by PMR. But it has been my life saver

[Jampad]

Hellyowl, I used to love exercise too, but could barely stagger around for a few months before being diagnosed. I have lost all my fitness. I`m just starting all over again, and hope to be like you and get better results all round soon.

[Dubler]

It is a juggling act for sure. I was diagnosed in July and started on 40 mg. It threw me into diabetes and I am now on insulin and glipizide BUT it is under control. My dr lowers my insulin amount as I lower the steroids. He believes the diabetes will go away as soon as I am off the steroids.

You have to have the steroids to keep the gca under control and everyone is different as to how quickly you can get off them. I am currently at 12, going to 11 next week. After that my dr said 10 mg will be a slow process. I will stay at 10 for a month. If you start having symptoms you have to go back up a little to get them under control because you don’t want to lose your sight or have a stroke. I started feeling more myself old self around 15 mg. I lost the brain fog or what I call a stupor. Right now my energy has returned and I can actually run errands and grocery shop without being wiped out. Best of luck to you. Hang in there

[Hidden in reply to Dubler]

How often do you see your Dr? I have been on insulin (humilin 3) for 2 years and the diabetes nurses and clinic Dr set my first dose, but they expressed that the daily level of my blood sugar and dietary factors were the main measure of insulin dosage. I have had well controlled diabetes since 2001, which over the years has been contrled by metformin, gliclazide, byetts a d at the moment 1g of Metformin twice a day, 2 injections of humilin daily and a weekly injection of duglatide... Aka truclicity. My hba1c wSas 48 pre pred, went up to 114 and is not back at 45. I wondered re use of insulin unless you already had diabetes. I just want to lsee hba1c to comment on you treatment.

[Dubler in reply to Hidden]

Since I have tapered down to 11mg I no longer need insulin. I take glipizide twice a day and that keeps it 85-100 in the mornings. My fam dr wants to see me in a couple of months to do all the diabetic bloodwork again. Right now I am on antibiotics due to a sinus infection and my sed rate was high due to it so he said he will wait till all that levels out and then due the bloodwork

[Dubler]

I’ve only been diagnosed since August of this year. There is a lot of diabetics in our family tho and I was considered prediabetic before I was diagnosed with gca so it was probably on its way and the steroids just pushed me over into it. My blood sugar at diagnosis was 534. It stays under 100 now with 7 units of Novalin 2x daily and a 5mg of glipizide 2x daily. I have cut out a lot of carbs like cookies etc. My main concern right now is my feet. They are numb. I’m going to see a neurologist in dec to get a test where they stick electrodes in your feet to check for responses. Sounds like fun😬

[Hidden]

Crikey 534...were you hospitalised?!?!?! No wonder you have neuropathy if it was that high. I think I would be doing no carbs whatsoever. I remember how terrible I felt at 114 (been trying to find anything with hba1c at 500plus and I can't.)

A visit to a dietician or nutritionist should be the next step in this. You need a low carb high (good) fat diet. You should cut bread, pasta, potatoes, fruit like ripe bananas, anything with sugar or flour. Obviously as you have done, no cookies or cakes, breakfast cereals. You need to get it down to double figures ASAP. I do wish you luck.

healthline.com/nutrition/lc...

[PMRpro Ambassador in reply to Hidden]

I understand BS 534 - not Hba1c.