[MAT52]

Sorry but I am so fed up just now. Dropping doses of oral steroid, Prednisolone, from 20mg to zero over a month because the nerve pain in my arms and legs was so epic. I need to be off it in time for a gallbladder op on 7th July in order to reduce risk of wound infection.

It worked at 20mg but at a price as my heart pounds and I feel sick and terribly anxious on the higher dose always - a bit manic. When I dropped to 15mg after a week I flared back up for 24 hours. Now same thing again after dropping to ten mg. The anaesthetist I saw today says he won't mind too much if I stay at 10mg although may need to then hike my dose straight after the op to boost levels so that my body doesn't dip too much. White blood cell count and lymphocytes are all a bit high just now because of the steroid. But on the plus side my CRP and ESR were both right down last week - showing that the nerve pain must be in part an inflammatory response.

I have at last found the results from the neuro tests I had done in January. The neurologist did say that there was one that flagged up for infection or autoimmunity but I'm not sure which this was because they all look to be in normal range to me. Hope it's okay if I write them here for anyone at all knowledgeable to comment on.

My legs burn but feel wet and cold simultaneously and my hands and wrists burn too. This has gone on for over a year now. My face feels achy and stiff and teeth/ gums are sore and very tight. My face feels numb and tingly around my lips and one side of my nose up into my cheeks. GP say this is TMJ but it doesn't tarry with the symptoms I read of TMJ too much.

I'm always dizzy and my special awareness feels off. I am always either freezing or in a feverish sweat and have lost sense of taste and smell to a large extent now. This has gone on for a few years now and is co,ing under the heading of RA still although I personally feel more like an MS sufferer than a person with RA these days .

[MAT52]

Results from January - MRI of brain shows signs of small vessel disease normal for my age (really depressing that! )

CSF; albumin level 229 (0-380)
CSF: glucose level 3.1 (1.7 -3.9)
CSF: protein level 362 (0-700)

Cerebrospinal fluid level IgG 34 (5-64)
CSF appearance Visible
CSF oligoclonal band screen - (blank space)?

My tap results were partially contaminated by trauma so not sure if this explains the blanks?

Serum cryoglobulin level - normal
EDTA blood -Treponema pallium - Negative
IgG level (blank space)?
Venous blood Borrelia burgdorferi IgG negative

Serum ACE level 37 (8-52)
Plasma glucose level 4.9 (3.7 -5.6)

The neurologist told me a few weeks ago that something in these had flagged up as probably autoimmune or infection but I can't see what this could be from these results. Any ideas anyone?

Presently my white blood cells and lymphocytes are a bit high and so are my liver enzymes but the anaesthetist said this is probably because of the Prednsilone and not a worry. I don't have the results of the skin biopsy from my calves unfortunately but told these were normal. It's a mixed blessing being normal as I feel as though I'm in the middle of the x-files - the burning, wet cold nerve pain in my legs 24/7 now makes me feel so scared and alone. I wanted to ask the anaesthetist to switch it off. My face keeps going numb and tingly and my GP says this is classic TMJ but when I look it up I see it says this is rare with TMJ and could be a sign of underlying disease such as MS.

[en bloc]

I agree with you if the Prednisone is helping the neuropathy, then it must have an inflammatory factor. 20 mg daily is a moderate dose (for a daily ongoing treatment). You don't mention how long you have taken this dose, but if you've done so for a couple weeks or more, then tapering should be slower then you describe. Going from 20 mg to nothing in one month is asking a lot of anyone. It's no wonder you flared after dropping 5 mg at once, then again the next week with another 5 mg.

If the doctor is ok with staying on 10 mg for the procedure, then you might want to consider it (after discussing it with your other doctors and neuro first). It would also be interesting to see if you get the same benefit (or enough benefit) from this dose vs the 20 mg...since you were having some side-effects at the higher dose. 10 mg daily for long term use is a much more acceptable dose than 20 mg.

I think you said your CRP and ESR were down to normal even before you started the steroids. And they seem to fluctuate up and down, so not sure if I would use these alone in determining inflammation. They can be helpful to gauge inflammation, but in your (difficult) case, you should go by your symptoms. If you are having less pain and symptoms with the steroids, then that should tell you it is inflammatory...especially if they pain/symptoms return when you lower or stop the Prednisone.

I can't help you with the labs, as they all look to be in range. So not sure what the neuro was referencing about an autoimmune or infection indicator.

I don't remember your history in full...have they done an MRI of the brain? If so, was it normal...completely normal (where you saw the report, not just told it was ok)?

I'm not sure why your WBC & Lymphocytes would be high...steroids should lower those, not increase them. After all, steroids are an immune suppressor. So you should ask the doctor about the levels as maybe this is what he was considering for an infection (as they would increase for infection).

Sorry I can't be of more help. I know it's frustrating. But if you have found that steroids help your symptoms, then you should look for the source of inflammation, and in the meantime, find an appropriate dose of steroids that keeps your symptoms at bay, but also not allow side-effects to get out of hand.

[MAT52]

Originally Posted by en bloc

I agree with you if the Prednisone is helping the neuropathy, then it must have an inflammatory factor. 20 mg daily is a moderate dose (for a daily ongoing treatment). You don't mention how long you have taken this dose, but if you've done so for a couple weeks or more, then tapering should be slower then you describe. Going from 20 mg to nothing in one month is asking a lot of anyone. It's no wonder you flared after dropping 5 mg at once, then again the next week with another 5 mg.

If the doctor is ok with staying on 10 mg for the procedure, then you might want to consider it (after discussing it with your other doctors and neuro first). It would also be interesting to see if you get the same benefit (or enough benefit) from this dose vs the 20 mg...since you were having some side-effects at the higher dose. 10 mg daily for long term use is a much more acceptable dose than 20 mg.

I think you said your CRP and ESR were down to normal even before you started the steroids. And they seem to fluctuate up and down, so not sure if I would use these alone in determining inflammation. They can be helpful to gauge inflammation, but in your (difficult) case, you should go by your symptoms. If you are having less pain and symptoms with the steroids, then that should tell you it is inflammatory...especially if they pain/symptoms return when you lower or stop the Prednisone.

I can't help you with the labs, as they all look to be in range. So not sure what the neuro was referencing about an autoimmune or infection indicator.

I don't remember your history in full...have they done an MRI of the brain? If so, was it normal...completely normal (where you saw the report, not just told it was ok)?

I'm not sure why your WBC & Lymphocytes would be high...steroids should lower those, not increase them. After all, steroids are an immune suppressor. So you should ask the doctor about the levels as maybe this is what he was considering for an infection (as they would increase for infection).

Sorry I can't be of more help. I know it's frustrating. But if you have found that steroids help your symptoms, then you should look for the source of inflammation, and in the meantime, find an appropriate dose of steroids that keeps your symptoms at bay, but also not allow side-effects to get out of hand.

Hi Enbloc. Thanks for your very helpful and considered response. My thoughts now are that these results came from a print out made before the others were back from the lab so it must have been the immunoglobulin ones (CSF and serum blood) ones which the neuro was referring to I think as there are some blanks on this print out I notice.

Re CRP and ESR. The ESR is used to monitor my RA and was up at 70 before I started Prednisolone. I had my bloods done again two weeks later - having been on 20mg for ten days and it had come down to 18 - corresponding exactly with the nerve pain (absence of) although the horrible creepy sensory stuff continued on but the throbbing, burning pain went out of it. It is now rudely back and I'm guessing my ESR will be back up after another week at the lower dosage. So it's the one blood marker I get taken which accurately reflects the way I'm feeling always - with a few days delay on either side or more as it is slower to respond than CRP.

My CRP is only taking occasionally but was up at 160 when I was in hospital on two occasions recently. This was because I had pancreatitis as an allergic reaction to Imuran. Otherwise it usually sits in the mid teens whatever my ESR is doing. Apparently this discrepancy is pretty unusual and is only found in Lupus or Vasculitis. It was down at 2.5 on Monday.

I'm awake in early hours now with my peripheries feeling as if they have been dunked in acid. So I've decided to go back up to 15mg again today as have a very busy weekend ahead. I'm 100% certain that my neuropathy is inflammatory it's just a question of how to get a diagnosis and treat it at source really.

My neuro has spoken to my rheumy now apparently. I did suggest to him that I might try IVIG but he said he'd never had a patient try IVIG for a rheumatic disease before although he has quite a few patients who take it for inflammatory neuropathies. I suppose the stumbling block would be to get NHS funding for this if I don't have anything showing in my blood or CSF. It may set a precedent and they wouldn't want that in the current cash strapped era.

I would far rather be allowed to try IVIG, a more natural blood born product, than keep thrashing about juggling steroid doses or risk a new immunesuppressant. But Cellcept might be an option for me next I'm guessing - if they think of it themselves. I'm not suggesting anything more to these guys because then I feel I've betrayed my body wheh I have yet another allergic response!

[MAT52]

Originally Posted by MAT52

Hi Enbloc. Thanks for your very helpful and considered response. My thoughts now are that these results came from a print out made before the others were back from the lab so it must have been the immunoglobulin ones (CSF and serum blood) ones which the neuro was referring to I think as there are some blanks on this print out I notice.

Re CRP and ESR. The ESR is used to monitor my RA and was up at 70 before I started Prednisolone. I had my bloods done again two weeks later - having been on 20mg for ten days and it had come down to 18 - corresponding exactly with the nerve pain (absence of) although the horrible creepy sensory stuff continued on but the throbbing, burning pain went out of it. It is now rudely back and I'm guessing my ESR will be back up after another week at the lower dosage. So it's the one blood marker I get taken which accurately reflects the way I'm feeling always - with a few days delay on either side or more as it is slower to respond than CRP.

My CRP is only taking occasionally but was up at 160 when I was in hospital on two occasions recently. This was because I had pancreatitis as an allergic reaction to Imuran. Otherwise it usually sits in the mid teens whatever my ESR is doing. Apparently this discrepancy is pretty unusual and is only found in Lupus or Vasculitis. It was down at 2.5 on Monday.

I'm awake in early hours now with my peripheries feeling as if they have been dunked in acid. So I've decided to go back up to 15mg again today as have a very busy weekend ahead. I'm 100% certain that my neuropathy is inflammatory it's just a question of how to get a diagnosis and treat it at source really.

My neuro has spoken to my rheumy now apparently. I did suggest to him that I might try IVIG but he said he'd never had a patient try IVIG for a rheumatic disease before although he has quite a few patients who take it for inflammatory neuropathies. I suppose the stumbling block would be to get NHS funding for this if I don't have anything showing in my blood or CSF. It may set a precedent and they wouldn't want that in the current cash strapped era.

I would far rather be allowed to try IVIG, a more natural blood born product, than keep thrashing about juggling steroid doses or risk a new immunesuppressant. But Cellcept might be an option for me next I'm guessing - if they think of it themselves. I'm not suggesting anything more to these guys because then I feel I've betrayed my body wheh I have yet another allergic response!

Ps I think 20mg Prednisolone is probably the equivalent of 30-50 for someone less sensitive to chemicals than me but my GP wouldn't let me go higher than 25mg because of my heart/ BP and propensity to side effects. I think 10mg is too low as the pain is severe now on this dosage so will aim for 15 again once the cholecystectomy is over.

[en bloc]

20 mg of Prednisone is a significant amount if taken daily. You wouldn't want to go to 25 mg or more. If you can get by with 10 or 15 mg, then do so. The long term effects can be devastating, even from these amounts if taken for a long time.

If you can get a trial of IVIG, go for it. It would definitely be a better overall and long term option vs steroids. Of course the cost is staggering and I don't know if your NHS would approve, but it can't hurt to try. It appeasr you can justify it's use with your ESR coinciding with your pain and inflammation while taking or not taking the steroids. So it should prove the inflammatory neuropathy, which should be covered with IVIG.

I have taken Cellcept (for a short time---until I got a bad infection). It was actually quite helpful and you may want to give it a try first before the IVIG. But after that, I don't think there is anything left that you haven't tried and then they should look at the IVIG. It's just not logical to put someone on long term steroids, knowing the damage it will cause.

[MAT52]

Originally Posted by en bloc

20 mg of Prednisone is a significant amount if taken daily. You wouldn't want to go to 25 mg or more. If you can get by with 10 or 15 mg, then do so. The long term effects can be devastating, even from these amounts if taken for a long time.

If you can get a trial of IVIG, go for it. It would definitely be a better overall and long term option vs steroids. Of course the cost is staggering and I don't know if your NHS would approve, but it can't hurt to try. It appeasr you can justify it's use with your ESR coinciding with your pain and inflammation while taking or not taking the steroids. So it should prove the inflammatory neuropathy, which should be covered with IVIG.

I have taken Cellcept (for a short time---until I got a bad infection). It was actually quite helpful and you may want to give it a try first before the IVIG. But after that, I don't think there is anything left that you haven't tried and then they should look at the IVIG. It's just not logical to put someone on long term steroids, knowing the damage it will cause.

Thanks Enbloc. I made this point about steroids to my rheumy and neuro and my GPs. It's not as if I didn't try four of these dmards properly. They all think I have RA - and even if mine has been non erosive to date it doesn't usually go away. If it is now seronegative lupus then it needs treating but I think Vasculitis is a much more likely candidate because of my age (post meno at 52) and this will go for my organs if left untreated. So I'm hoping they do offer me Cellcept although I've no kidney involvement to date apart from a large irregular cyst on one. No have I got lung involvement yet but had pneumonia in March so I feel my autoimmune disease could be taking tentative steps towards my organs now. Don't want to wait for it to happen really.

The point about using steroids only is that they don't modify the disease process - they just mask it's symptoms. Also I think the risk of adrenal fatigue is high and I already have arrhythmia and a big family history of premature death from sudden heart failure (both parents) and the Prednisolone is driving up my Blood Pressure and making my heart beat fast at 15mg. At the lower doses I noticed things go the opposite way and everything slows down dramatically - the symptoms of autonomic neuropathy were horrible on Friday - sweats chills, strange moments when I feel like I've wet myself and I forgot to breathe while resting and feeling that my world was ending somehow? I don't want to risk adrenal failure and hoping none of my doctors want to risk this either with me.

As you suggested I've used my fluctuating ESR and high PCV and others to demonstrate that I have an inflamnatory disease here. They say they know I have autoimmunity anyway and don't need convincing and yet they also feel that they need to know where this disease of mine is heading before prescribing "big gun" targeted drugs such as Enbrel etc. I don't want to try these drugs myself because I don't feel these are appropriate with my idiopathic peripheral neuropathy - Ms hasn't been entirely ruled out yet - being my worst symptom for a year now. I would like to be allowed IVIG because it's less toxic and my symptoms are so similar to those with CIDP. I suggested this to my neuro and he looked startled and said this wouldn't be anything he had ever come across for someone like me.

I would be happy to try Cellcept as a more immunesuppressant option. But I'm not making any more suggestions to them now because they are handsomely paid to do their jobs and each time my rheumy gets me to suggest a drug I've researched and then when I get terribly ill he suggests that I've brought it on myself because I wanted to try it! I think I need to go and live in a drug free cave!