Severe backache

[ingemlb]

Just wondering if anyone else has had excruciating backache centre of back as part of pred withdrawal/tapering?
Mine started on and off with intermittent twinges shortly after reducing the pred. Then the twinges turned into sharp pains that take your breath away. Feels like my back is breaking. Today it became constant no longer intermittent. Have just taken a pain tablet so will see what happens. But in general the withdrawal symptoms have practically put me out of action :(
as recent blood tests came back looking good (no active inflammatory disease) I don't believe it would be a flare.

[mishb]

Sometimes pred withdrawals can be so debilitating that you just have no option but to increase it a little bit, to take the edge off.
it's just not always textbook symptoms.

I'm certain that your specialists wouldn't want you to be in this much pain during a pred decrease, withdrawal symptoms or not.

I would go up 5mg or even 10mg and then try a drop of 2.5mg again in a couple of days time.

What amount are you on currently?

[ingemlb]

Thanks Michelle. I am now on 25 mg. I took 2 Panadol osteo and that helped with the pain. Will see if I can manage on that. If not will see if increasing pred fixes it but I am terribly keen to cope with a lower dose:(

[Alysia]

I don't remember reading here about backache as a result of pred reduction. only about headaches.
you should better go to your doc to check it. I am sorry for your pains. get well soon :hug1:

[ingemlb]

Funny enough Alysia I read about Flank pain as part of prednisolone reduction. Also under withdrawal symptoms they list joint pain.

Another thing I don't know is if inflammation in bones shows up in blood tests. I apparently have a lot of inflammation in my bones which was discovered during a bone scan in hospital. I may need to have another one done if this pain doesn't improve.


Also had a very bad hypo yesterday which was rather disappointing after having reduced the insulin and no hypos for a few days. So if this doesn't' settle down soon I think I'll just go back to hospital and let them stabilise me there.
Anyway woke up without pain this morning so .. touch wood. Hope it stays this way today.

[windchime]

Inge try 27.5 mg and see if that stops the pain rather than all the way back to 30 mg. It's possible that you're tapering too fast. I know that I've tried to get to 10 mg three times and every time I make it I can't take the pain and have to up it back to 20 mg and start all over again. This time I've been tapering at 1 mg every two weeks. So far so good as I'm down to 11 mg. It's slow, but better that than the pain. Just a thought.

[ingemlb]

Thanks Cindy. I will keep that in mind. At the moment I am thinking if I can manage with pain meds maybe it's worth pushing ahead. However if it gets any worse will have to increase the pred :( It's all so confusing. Not sure what's better. Taking pain meds and resting to help with the withdrawal or keep putting the pred up again :( The longer I stay on higher doses of pred the less likely the diabetes will reverse itself. So I have a few reasons for trying to get off it. The other one is we need to know if the MTX is doing it's job and whilst I am on higher dose Pred it's difficult to tell if the MTX is the right drug :(

Wish it were more clear cut. Also trying to tell the difference between withdrawal and flare!!!!

[windchime]

Please just remember that you can't force things to work out the way you want them to. You may harm yourself by trying. Going up 2.5 mg for an extra week or two won't make that big of difference, I don't think. When you do your next taper I would not do a full 5 mg I would do the 2.5 mg.

[Alysia]

Funny enough Alysia I read about Flank pain as part of prednisolone reduction. Also under withdrawal symptoms they list joint pain.

Another thing I don't know is if inflammation in bones shows up in blood tests. I apparently have a lot of inflammation in my bones which was discovered during a bone scan in hospital. I may need to have another one done if this pain doesn't improve.


Also had a very bad hypo yesterday which was rather disappointing after having reduced the insulin and no hypos for a few days. So if this doesn't' settle down soon I think I'll just go back to hospital and let them stabilise me there.
Anyway woke up without pain this morning so .. touch wood. Hope it stays this way today.

I am sorry for giving wrong info. thanks for your clarification. I am glad that its over. I hope that other things will get better soon :hug1:

[ingemlb]

Sadly Alysia it's not over yet. I wake up without pain. Resting helps. The pain then kicks in as soon as I try to move around. Yesterday decided to go back onto regular Panadol Osteo which is 650 mg Paracetemol. I am taking 2 of them 3x a day to get all round cover. So I take one dose very early in the morning then one around lunch and one after dinner then nothing until the next morning. This worked last night as I ended up in bed by 8pm and slept though until 5am. Unfortunately I have to get up 5am and eat or I would be facing another hypo.

Which brings me to the main reason Cindy I don't want to muck around with the pred and go up again. I am having a hell of a time with the blood sugar stabilisation. First few days after reducing the Insulin I stopped getting hypos. Then the day before yesterday I had another one. Yesterday none. But the sugar seems to climb up very high after dinner due to the pred. So if I am just borderline keeping the sugar low enough in the evenings without causing hypos during the night and the mornings. If I go up again with the pred now I will need to go up with the insulin as well. Then I will be back in the same boat with the hypos. Hence my thoughts were that if this is all likely due to pred tapering then if can manage the unpleasant side effects using pain meds and maybe some occasional valium I am better off than keep going up and down with the pred.

Apart from making me feel miserable can the pred tapering cause damage?

This is now my 7th day on 25 mg of pred. Before that I was 3 weeks on 30 mg. It seemed to take me 2 weeks to settle after dropping from 35 to 30mg. The last few days before my appointment with my Rheumy early last week I had managed to wean off all pain meds. So I was hoping that maybe it just takes me the full 2 weeks to get over this. Which makes me think I should probably wait an extra week before tapering down again and I hear your point about trying to taper by 2.5 mg. I may do it that way next taper and see if that is less painful.

What had me really puzzled was the new pain in the dead centre of the back. Feels like in the area of the spine. However I just recently had an MRI of the spine and my Ophthalmologist said it looked unusually good for someone my age. So nothing wrong with the spine apart from soft tissue inflammation. However this pain feels like the back is breaking :( But only after I move around a bit. Then it stays. However the paracetemol makes it bearable.

Thanks all so much for your support. It is good to be able to talk about this and get some better insight by hearing how others cope. I am so new with all of this.

Anyway as I mentioned above if I can't get on top of this in the next few days I am heading back to hospital. Mainly as I am too scared re getting the blood glucose also under control.

[BookNut]

Funny enough Alysia I read about Flank pain as part of prednisolone reduction. Also under withdrawal symptoms they list joint pain.

Another thing I don't know is if inflammation in bones shows up in blood tests. I apparently have a lot of inflammation in my bones which was discovered during a bone scan in hospital. I may need to have another one done if this pain doesn't improve.


Also had a very bad hypo yesterday which was rather disappointing after having reduced the insulin and no hypos for a few days. So if this doesn't' settle down soon I think I'll just go back to hospital and let them stabilise me there.
Anyway woke up without pain this morning so .. touch wood. Hope it stays this way today.

I have minor, but chronic pain in my right hip/flank area. It is quite livable with occasional chiropractic adjustments. It started from a bad fall on ice when I was only 18. Anyway, the one blessing of being on pred for me is that the back pain disappears for the length of the taper. After I am off for a few days, back it comes. But, given the choice, I'd rather be off the pred. Maybe your doctor could recommend a good chiropractor or massage therapist. Lots of quacks out there who don't know what they're doing. I am blessed because my Primary Care doctor is an integrated medicine practice, and there is a good chiropractor and massage therapist in the group. My PCP pulls no punches. If she does not aprove of a particular practitioner or physician, she tells me that "I wouldn't send my ex-husband there!". Very blunt, but I can count on her not to be wishy-washy!:rolleyes1:

[ingemlb]

Thanks Jacquie. But the recent MRI showed absolutely nothing wrong with my back. The flank pains started when I first tried to reduce the Pred but then when I went back up to 40 mg for a week they disappeared and have only occasionally come back. I then read about them being part of the potential list of pred withdrawal symptoms so now not sure if what I had first time round was a flare or pred withdrawal.

ever since early last year I keep getting strange pains for a while in one spot then they disappear and crop up somewhere else. I had knee pain in the left knee. We found some torn meniscus but the pain disappeared. Then I had it in the right knee where nothing was torn and it disappeared. Most of the year I had severe shoulder pain. They found the shoulder full of inflammation. that pain hasn't returned since I started treatment. Then there was intermittent hip pain in the right hip. Coming and going all year. But not since start of treatment.

So in my case all pains seem to be caused by inflammation of joints, soft tissue or bones.

Hence not sure if any physical manipulation is wise right now :(

[windchime]

You should not be having these severe ups and downs. This is not all due to the pred. If you are waking up in the morning hypo I hope you are not taking the insulin. Blood sugar always spikes after a meal. When you say high, how high? If it is being caused by the pred it would be high before your evening meal. I'm not sure your insulin dose is correct if you are having all these problems.

What are your numbers when you are hypo? Typically hypo is below 60. If you are running hypo in the AM check your BS before having an evening snack. If it's less than 120 have a snack that has some carbs in it to prevent the hypo in the AM. If sugar is too high in the AM then adjust the snack at night. I would keep a log of your BS and what time and what time you took your insulin and pred. This will give you a better idea if there is a trend and you can show it to your doc. I just finished doing this for my doc. It really made me cognizant of what I was eating and what foods would cause my BS to spike. I found it very interesting.

I use the same insulin pen as you. It has a fast acting and intermediate acting insulin. I'm on 35 units in the AM and PM. That along with diet keep me fairly well regulated. Does it go high sometimes, sure. Especially if I have a high carb dinner. The pred doesn't seem to affect it as much at the 11 mg dose.

Reducing pred too fast can cause a renal crisis. Acute adrenal crisis: MedlinePlus Medical Encyclopedia (http://www.nlm.nih.gov/medlineplus/ency/article/000357.htm)

[ingemlb]

Hi Cindy. I am writing down my BS when I measure it, which happens a lot more than I was told to measure it. We use different measurements. I already get the hypo symptoms when I hit 4.0 but officially a hypo is below 4.0. The idea is that fasting blood glucose should be between 5 and 6 and between 6 and 12 after eating.

So I wake up in the morning and find my blood sugar is around 5.0 so I know it's best to eat as if I wait until breakfast at 9am I will def have a hypo. Then at 9am I take the insulin (20 units Novamix) and have breakfast. By 11am I need to measure my sugar and often it is very close to 4.0 or I already am so close that I am sweating and shaky. So then I have something sweet very quickly. Then we have lunch around 12.00 and I take my Pred after lunch. At the moment 25 mg. During the afternoon I am fine. After dinner the sugar starts to rise. Of course if I stay clear of carbs it doesn't rise quite so high. I find that if it is back down to 8 or lower at 10pm I need a snack like yoghurt, berries, nuts and banana. That will mean I get through the night. However when I wake up (often around 2am or 3am) I measure the sugar just in case. Some nights by the time I get to bed the sugar has climbed over 15 which is way too high. Then I know I will be ok but the funny thing is by 5am it's back between 5 and 6. So that is the slow release insulin working away during the night.

The nurses at the hospital wanted to get me to take the pred with breakfast but the Endo insisted I had to separate the timing and take the insulin with breakfast and the pred with lunch.

Anyway if I were constantly on the same dose of Pred I would have figured out by now how to keep things stable with food. However with the lowering of the pred the insulin had to be lowered so now the figures were all over the place for a while and if I go up with it again then I have to figure it all out again. Also I have read that the longer you stay on the pred the harder it is to reverse the diabetes. And I really wish to get back to where I can control it all with a healthy diet instead of stuffing myself with sweet stuff just to counteract the insulin.

I will study up on acute adrenal crisis. Like I mentioned if things don't settle down soon I think I will just go into hospital where they can stabilise the lot and where I can immediately see an endo instead of having to wait until my appointment in early June. The new Endo that I am seeing works at the same hospital so I would be able to get hold of him sooner.

As to the adrenal insufficiency I was expecting that to be more of a problem when the pred drops below 15 mg?

[windchime]

Inge, from what you wrote it sounds like your morning insulin is too high. If you are hypo when you wake up and eat something to get through until breakfast, then eat breakfast, then take the insulin, which counteracts the food you just ate it's creating a yo yo effect.

"And I really wish to get back to where I can control it all with a healthy diet instead of stuffing myself with sweet stuff just to counteract the insulin." If your insulin is adjusted correctly you shouldn't have to stuff yourself with sweets to counteract the insulin. If you needs something try a glass of juice, it works quickly.

As you know I agree witht the nurses that your pred should be taken in the morning. The adrenals release the pred in the AM so taking it in the AM is keeping with the normal function of the adrenal gland. Maybe you can discuss it with your new endo.

While on pred my endo added another insulin, Novolog Flexpen. It's a fast acting insulin. I'm to test 4 times a day. If my insulin is high, in my case over 150, I take 2 units for each 50 over 150. This is in addition to the Novolog 70/30. In the beginning I used this a lot. Now only occasionally. This helped get through the really high spots. With that being said I was fairly well regulated before I started the pred. Are you on metformin also? If not that may help. That's an oral med.

Inge please don't take this as I'm trying to second guess or tell you what to do. I'm just trying to give you some ideas that you might not have thought of. I've been a diabetic for 10 years and on insulin for the past 3 years so I know the ups and downs and difficulties with this disease.

Have you thought about getting a massage? I've found that when the muscles in my back start hurting that a massage really makes a difference. Just a thought.

Good luck and if I can be of any help please let me know.

[ingemlb]

Hi Cindy. I have a small snack on waking (banana yoghurt) so I don't get a hypo before breakfast. Then i take the insulin (by the way I only have morning insulin, I only take insulin once a day) before eating breakfast. I have already reduced it recently from 20 to 16 units and that has made a difference. Also I found by eating 2 pieces of wholegrain toast along with the breakfast I seem to last ok until lunchtime without a hypo. I was trying to give up all grains but I think I will wait until I am stabilised with the pred and insulin. In the hospital the Endo told me to take part of the breakfast and keep it aside for a mid-morning snack. Which is ok if you remember to take it :(

Yes I could benefit from some kind of pure fast acting insulin after dinner which is what the nurses in hospital had access to if my blood glucose jumped too high. I have a great deal of respect for the Endo who saw me in the hospital so I am hesitant to over rule his instructions as I can't discuss with him at the moment. He seemed to have some experience with methotrexate induced diabetes. I should have asked him why he felt it was best to separate the insulin and pred. In my case, having stomach ulcers, complicates a lot of things as well. I have to eat with every medication I swallow, as they all affect the stomach.

I was told I need to ring the Endo if the blood sugar goes over 14 however he also told me if it starts to drop fairly quickly not to worry about it. In my case it never stays that high for long. So I have been putting up with it and trying to reduce carbs I have for lunch and dinner helps as well.

If I manage to keep the blood sugar lower after dinner by reducing carbs I eat then of course it drops quite a bit by 10 or 11pm and that means I need some supper before heading to bed. This is what I mean about the Novamix continuing to dispense insulin right through the night. I figure I probably don't need it to do that hence I was thinking I would be better off on a pure non-mixed insulin. However I have not enough experience with it. I am hoping i can get back to controlling all with diet alone once I am rid of the pred (BIG IF HERE :( )

Thanks for all your help Cindy. It's very much appreciated. I am scared to make changes by myself but I will see my GP later today and see what he knows about managing diabetes. In the past he hasn't shown a great deal of interest in my figures. So I guess he thinks I need to discuss these things with the Endo.

Its taking me a while to find my feet with all these new doctors. They need to get to know me so I prefer to work closely with them until they feel they can trust me to decide for myself. My previous doctors and specialists I had been seeing for decades so I knew what to expect and they were always very approachable. However I had to change due to the Wegener's diagnosis. So it's taking a bit of time.

[windchime]

I'm sorry I thought you were on insulin AM and PM. Since your blood sugar comes down during the night even though it spikes after dinner, I don't think you would want to use a fast acting insulin as it could create a hypo situation for you. It's normal for your blood sugar to spike after a meal. It usually takes a couple of hours for it to come down. If you have a high carb meal it will take longer to come down and spike higher. Good luck with getting it regulated. It's unfortunate but it takes time and patience to get it right. I was just increased from 30 units to 35 units and will hopefully get to reduce it eventually. I've made drastic changes to my diet to assist with the lowering. I was diabetic prior to the pred also.

My endo was looking at an a1c test where I had only about 3 weeks of diet change. I do have to say that it was lower than last time which surprised me. If you can get your endo to run this test, which shouldn't be a problem, it will give him/you a view of what your sugar has been doing over the past three months. I work to this figure since it's seems to be the most important to the endo.

You shouldn't adjust your insulin yourself unless you are on the fast acting stuff and the doc has given you the guidelines. If BS is XXX then take XXX units of insulin. But you can talk to your endo about your concerns.

[ingemlb]

Thanks for clarifying Cindy. I figure if I can't get this sorted out quickly I will force myself onto an Endo at a hospital as I still have a few weeks to wait to see the one willing to take me on as a new patient. The problem is they are overloaded and can't take on private patients but go to the hospitals every day so it's sometimes easier to get to see someone once admitted to hospital. Only takes them a few minutes longer to see another patient I guess.

I am coping at the moment. No hypo this morning either. And the pain meds are making me feel better but I am resting quite a lot. Of course I would rather be on my treadmill but ... can't have everything at once :)

I find within 10 minutes in the kitchen I am back in pain and too weak to move around. So I space myself. Ten minutes at a time :) Eventually things get done.

I am lucky my husband is retired too so he helps me when I can't cope.

thanks for the advice re the A1C test. I will ask my GP about it today and if he can give me a script for it I can make sure the results are with the endo by the time I see him :)

[windchime]

Remember your spoons, Inge. Sometimes we have more, other times less. I forget this myself especially when I babysit the grands.