Cymbalta

[Zareda]

I explained to my rheumy at last visit that my symptoms intensify greatly for 2 weeks with each taper then slowly back down until the next taper. Now he wants me to try Cymbalta because he thinks it’s nerve pain. I’m not really on the same page as him. I just think the taper is too fast....1/2mg every 4 weeks. I’m at 3.5mg now. Any ideas or comments?

[SheffieldJane]

I had to look up Cymbalta and have to say that I can’t imagine it being helpful in our conditions. I agree with you about being pressured to reduce Prednisalone too fast. You have felt this from the outset. Any chance of a second opinion?You are also on a dose where your Adrenal system is having to produce its own Cortisol. This can compound your symptoms. Can you get a referral to an Endocrinologist so that you can have a Synacthen Test to ensure that you can produce the Cortisol that you need?

[Zareda in reply to SheffieldJane]

This rheumy is actually my second opinion. I asked about adrenal Insufficiency and his answer was your adrenals are fine because your blood pressure is stable 🤦🏻‍♀️. Just makes sense to me that it’s steroid withdrawal if it happens every time I taper. Why he thinks I need Cymbalta for nerve pain is beyond me.

[123-go]

If your rheumy 'thinks' you have nerve pain he should refer you to a neurologist before adding another treatment. A nerve conduction test or electromyography (EMG) would confirm. I definitely wouldn't take another medication for an unconfirmed diagnosis. Stick to your guns on this issue.

[Zareda in reply to 123-go]

Other than the muscle pain from the PMR, I have no other symptoms of nerve pain. No need to add another medication to the equation in my book for what it’s worth.

[DorsetLady PMRGCAuk volunteer]

Have you tried a slow tapering plan - they were designed to stop the withdrawal symptoms - either of these -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

The sheer lack of knowledge of some doctors does stun me at times!! Technically, it isn't too fast. But the percentage change increases the lower you get and so the steroid withdrawal can get worse - and for some patients it doesn't need to be much of a change for them to notice it. What on earth makes him think it is nerve pain? And as SJ points out - this is return of adrenal function territory into the bargain which Cymbalta won't help. The lower you get, the slower it needs to be.

Have you tried one of the slowed tapers? I find one day at at a time means I don't feel awful day after day which is the worst aspect, and after 3 or 4 meeting with the new lower dose my body accepts it will be fine tomorrow ...

[Gaz227 in reply to PMRpro]

Just say this thread any advice , I’m currently tapering from 4 to 3.5 I’m at the very end of the taper one day old dose 5 days new dose , and I’m in so much pain , it’s always at 3.5 that it all falls apart I’ve tried this about 6 times now to get to 3.5 using the dead slow method and after about a week of not being able to function properly gone up to 5 and started again once it settled down. My Rheumy told me a couple of years ago , so that was about 2 appointments ago (seeing one theses days is like collecting rocking horse poop) waste of time doing an adrenal function test why I don’t know as I am convinced mine aren’t doing the job below 4 Mg , what would your advice be , go back up or sit it out and see if the pain sub sides after 2 or 3 weeks . It’s no fun this is it . 😩

[PMRpro Ambassador in reply to Gaz227]

There are 2 points here - however slowly you reduce you will not get past the target: the lowest effective dose that gives the same relief of symptoms as the starting dose did. Then there is the adrenal function - but what you describe is more like the PMR inflammation no longer being controlled by the dose of pred. You need to stay at 4mg and stop yoyo-ing the dose because that often adds to the problems of reducing.

Your rheumy is also out of date - the synacthen test is not perfect, it doesn't show if the feedback loop as a whole is working properly as too many things are involved. What it DOES show is whether the adrenal glands are capable of producing cortisol at all and whether it is a decent amount in response to a kick. If they aren't you need to have a plan in place for an emergency - as well as reducing even more slowly to allow the adrenals more time to recover. And there has been fairly recent work done in Leeds showing that probably atleast half of patients who have been on long term pred do have adrenal function problems.

[Gaz227 in reply to PMRpro]

Thanks for the info I will make some notes for the next time I see my Rheumy , I said in a previous thread that he wants me on MTX not just as a spairing drug but he suspects I have Sapho, it’s always in the back of my mind that if it is Sapho the pain I am experiencing could be more related to that condition than Pmr as pred would I believe hide the symptoms of that also but not slow down the disease . What a minefield .

[DorsetLady PMRGCAuk volunteer in reply to Gaz227]

As PMRpro says maybe 4mg is what your illness needs at the moment.....and if it is, then it is! Doesn’t mean it will be forever, but just for now.

As for adrenals, maybe they are still struggling. Mine took a long time to get going - about 9 months whilst reducing from 6mg down 3mg.....but got there eventually.

Patience really is the name of the game - even more so at very low doses!

[Gaz227 in reply to DorsetLady]

Thanks for the reply , time wise I’ve been trying for over 2 years to go from 5 to 3.5, just feel like I’m banking my head off the wall and the usual from the Rheumy you have to get of the pred . Frustrated more than anything

[DorsetLady PMRGCAuk volunteer in reply to Gaz227]

Well perhaps you’re one of the very unlucky ones that needs to do tiny steps. But having said that Prof Dasgupta did say on a fairly recent YouTube he keeps some of his patients on 2.5mg for a long time.

As for Rheumy, he’s being a plonker - instead of trotting out usual rubbish he should be doing something to help.... any chance of ditching him and finding somebody sensible?

[Gaz227 in reply to DorsetLady]

I will put that prof name in YouTube I’d like to hear his thoughts , I saw a doctor Hughes privately down in Surrey , he told me I would most likely be on a low dose of pred for life , I am getting a lot of arthritic joints now , being a competitive combat sports person all my life , 60 now , has not been kind to my body . It is possible that the arthritis is at a level now that I can’t deal with it without meds , as when I take Arcoxia which I haven’t for sometime after 24 hours I feel like a new person . Just wish I could get a game plan , thanks for your help and knowledge , you folks on this forum are literally life savours , I ‘ll be honest I’ve been at the end of my rope these last 12 months . It’s little conversations like this that give some hope where to look next . 👍

[PMRpro Ambassador in reply to Gaz227]

I'd go back to Rod Hughes - be a good birthday/Easter/xmas pressie if you can scrape it together...

[Gaz227 in reply to PMRpro]

When i went to see Dr Hughes, my present Rheumy found out and was really sharp with me, he said why have you gone to see him. i said i wanted a second opinion, he said what's wrong with mine, i didn't want to get in a slanging match with him, it wouldn't have done me any good. He's part-time now only works 2 days a week and neither of them are mine at the moment, think i am going to call my GP and tell him how i feel about the situation it's not doing my mental health any good. thanks for the interest .😀

[PMRpro Ambassador in reply to Gaz227]

I would have reported him - it is your business and the easy answer is "He is polite ..." Rod plus a good GP is what you need, not a control freak ...

[Gaz227 in reply to DorsetLady]

That YouTube video with the Rheumy from Southend was so interesting , so true about educating GP’s on PMR diagnosis , I’m afraid I fell into the category of give him the steroids then send him for the blood tests so who is to say what’s wrong with me after 6 years still haven’t got a clue .

[Zareda in reply to PMRpro]

I tried to do it slower but he controls the amount of steroid I get to make sure I’m not dragging it out. I really don’t have the option to go too slow or I will run out.

[PMRpro Ambassador in reply to Zareda]

Then you need a new rheumatologist - or a GP - who will work with you to reduce the dose to suit YOU and not their rigid preconceptions. Patients are not machines and ALL the guidelines emphasise that tapers must be adjusted individually in line with symptoms in order to find the best approach for each patient.

[Manchild in reply to Zareda]

You have to be inventive to get the amount of steroids you need. If it were me, I would tell him I accidentally spilled the supply in the sink, and have him give me more!

[Zareda in reply to Manchild]

😂Love it!

[Pixix]

I suffer the same, but not as badly! It takes my body two weeks of each month to get used to the new lower dose, but once it does, it seems happy, so I’m pursuing it! I just get more tired, & mild shoulder pains which shows it’s not quite ready for the next taper..but if I pursue, it settles down. Changing dose every month. When I told my rheumy (first consultation with a rheumatologist, mainly handling it through local doctor quite fine, but started inflammatory arthritis, so referred) she said if dropping from 4mg to 3mg, for example, do 4mg one day, 3mg the next, & so on. She said it may take a bit longer but that doesn’t matter & May be easier on my body! Hope my story helps a little! Probably changing dose every six weeks now, as she suggested! Good luck.

[PMRpro Ambassador in reply to Pixix]

I'd say even alternating doses like that was pretty fast at this level!! If a dose change is recommended to be only 10% of the current dose, even 1/2mg is above that, not much but still.

[Pixix in reply to PMRpro]

I agree, it is fast! But I’ve seen, over the past four months now that, although I’m not comfortable the first two weeks of the drop, my body does then accept the drop OK, & I can move on...without a huge, major cannot get out of bed type flare. I’m determined to kick them into touch, as they are now responsible for 4 stones of extra weight (2 through asthma treatment about 5 years ago & 2 since I started Polymyalgia). I need to lose the weight, & I only put more & more on when on steroids! Right now I’m in week 4 of 4mg, & I haven’t yet tried the alternating days, really. I feel OK, PMR wise & ready to try 3mg from Easter Monday! Heading for zero, but expecting explosions! S x

[Zareda in reply to Pixix]

Thanks you for sharing your info. I did attempt alternating dose for a week or two but rheumy was very upset that I was dragging the taper out. He said I would have to consider adding methotrexate if I can’t manage getting off the steroid in a “reasonable” amount of time which in his opinion is 12 months.

[PMRpro Ambassador in reply to Zareda]

Only 1 in 5 patients is off pred in his "reasonable amount of time". You need a rheumy who knows what he is talking about - and he doesn't. If you are already under 5mg it is lunacy to add methotrexate with its added layer of side effects and which doesn't always allow patients to get to a lower dose. I don't care what he thinks - real life is a bit different.

[Zareda in reply to PMRpro]

I agree with you 100%. This is strike two with rheumys and I am frustrated with their textbook approach. It’s as if they go by a checklist and if you are not following it, then you are a noncompliant patient.

[PMRpro Ambassador in reply to Zareda]

Professor Dasgupta - who's probably forgotten more about PMR and GCA than your chap ever knew - told us last summer that he often keeps patients in 2-3mg indefinitely as it avoid the risk of relapses and a return to high doses.

[Pixix in reply to Zareda]

It’s the aim of most medics I think, the 12 months period! But it was my aim, too, without them! But I found it impossible & reassessed my goal, which is now 18 months. Discussed it with my gp & he’s happy with the results so far...tbh, I’ve only the one appointment with a rheumy & we didn’t really discuss PMR at all...the referral was for inflammatory arthritis. I’m sorry you are finding problems with the consultants, that’s lousy. But I think you have to make your own mind up as to what you want to do, & present it to him, together with your reasons, your symptoms when you reduce too fast etc etc. Blind him with facts of your case, but I’m not sure you need methotrexate & it’s potential side effects...the experts here will advise on that, though! Good luck, S x

[Zareda in reply to Pixix]

Thanks for your input. I just keep pushing along to the best of my ability. I’ve lost a lot of trust in the medical profession along the way unfortunately.

[Pixix in reply to Zareda]

Understandable, but sad. Hope you can find somebody better...& soon!

[Gaz227 in reply to Pixix]

Might be a silly question but how poorly do you feel on a 1to 10 scale during that 2 week period of reduction , can you exercise , I mean like go out for walks etc not extreme exercise . I couldn’t get out of bed this morning I was morning my back groin and various muscles where awful , mentally at o e stage I decided to stay there for 24 hours , but my sensible head got together and said that’s not going to help , 10 minute cold shower and I was moving again albeit not with a happy face .

[Zareda in reply to Gaz227]

I feel absolutely miserable for those two weeks and I’m really not functioning enough to do anything.....even hurts to lift a mug of coffee. I just keep looking ahead for the next two weeks when it eases by about 50%. Previously, I would not have been happy at that level, but now I settle for any relief I can get. I’m really afraid what’s going to happen the lower I get.....I’m hoping my body will adapt, but as of now it doesn’t look promising.

[Gaz227 in reply to Zareda]

Thanks for the reply , keep posting it helps to talk , good luck with future reductions

[Zareda in reply to Gaz227]

Good luck to you also!

[Pixix in reply to Gaz227]

To be honest, with the stuff I’ve got something hurts the whole time, it’s either the fibromyalgia or the Polymyalgia or the arthritis, oh & the residual effects of four car crashes! I just plough on. It’s like walking through thick treacle. I do, however, have a whole world of painkillers available & I take some on a regular basis to take the edge off, otherwise I might just stay in bed, or in a chair. I git used to the effort as I worked 60+ hours a week, travelling round Europe with most of it. Polymyalgia hit me like a brick, though, & it’s taken me 14 months to get to 4mg. I plan the two weeks when life is easy, my husband then does the cooking, washing machine, drying. I don’t make appointments for that time. Yes, I walk somehow, whatever, every day. Either on the machine or in the forest by us. It helps some of it. But I am only walking on sides of my feet now as arthritis so bad in big toe joints! I have developed some more sedentary hobbies, & I’m just so grateful when those two weeks are gone! So is my hubby as I get very moody at times when I’m reducing! I’ve put on so much weight (but it’s not the steroids themselves, as my rheumy told me, they just give me the huge appetite, which I’m not strong enough to deny, so it’s my fault!) hope this rambling helps...oh & don’t get me started on lack of sleep or appalling nightmares....I guess 11 out of 10 some days & between 6 & 8 on others, tbh!

[Gaz227 in reply to Pixix]

Sounds dreadful , hope you find a way through it all, keep soldiering on . 👍

[Pixix in reply to Gaz227]

Thanks...I keep smiling, it makes the world a happier place! Some days it’s much harder than others, though, especially after 14 months of shielding!! S x

[Zareda in reply to Pixix]

I feel for you

[Pixix in reply to Zareda]

Kind of you, but I’m enjoying a better quality of life than a lot of folk on this forum, so I’m very lucky, really! S x