I think I need some help. I managed to reduce to 2 mg of Pred but after a couple of weeks the pain and stiffness comes back in my thighs. Last time I went up to 5 for a week then 3 for two weeks and the pain went. Just after settling back on the 2mg I had breast surgery for DCIS. I’ve still got a lot of pain and tenderness in the breast post surgery and now the thigh pain is starting up again. I’m guessing I should go back to 5 mg and stay on it for a couple of weeks. Any other ideas? I’m really anxious to get my adrenals back to normal because of the ME. I’m in a bit of a mess health wise and really demoralised at the moment.
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Seraphina56
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Hello, it’s really horrible when it feels like everything is out of control with your body. As usual I’ve got a raft of questions. Can you say a bit more about how you’ve been getting from 5mg to 2mg? Also, when was the breast surgery and what was the procedure? What do you do in the day? How are you sleeping? What supplements do you take, if any and have you had your vitamin D level checked? As you know the adrenal bit takes it’s own sweet time and whilst reducing is the only way to get them back, reducing too fast doesn’t help either; it’s a devil of a conundrum. Others will be along soon.
Hi. Got from 5 to 2 without problems. I take Vitamins D C B. Zinc, magnesium and some homeopathy. Also a herbal Adrenal Support mixture, all good quality. The surgery was a lumpectomy (wide excision) on 28th October. I’ve had the usual full blood count and routine urea and electrolytes at the GP. Can’t remember if it includes Vit D levels. Sorry. They say the breast pain will go but it’s taking its time!
28th Oct this year?? If so I’m not surprised its still hurting. I’ve worked with surgeons for years and have lost count of the number of patients who were worried because they were still feeling uncomfortable long after the scar had apparently healed. They often play down the procedure as to them it is straightforward but to the body it is’nt; a lot of healing has to take place and nerves have been cut. It takes months for healing to fully occur, even a year, so don’t let that surprise you. If the pain is increasing or remains moderate all the time, there’s swelling or inflammation it’s worth getting it checked.
I’d be wary of the adrenal support mixture. Your cortisol producing sequence needs the right signals to occur. If your anything is added that takes the place of any part of that chain, it may not ‘learn’ for itself. Some remedies even have steroid like compounds which is what you’re trying to learn to live without.
You may have to ask for the vitamin D. Some GP’s do it routinely, some don’t.
thank you for this. I had the same thing about ten years ago and recovered very quickly so this came as a bit of a shock. With the ME and the PMR I can’t face the thought of this breast issue turning into another chronic problem but I feel reassured now that it will clear up.
I did have the synacthen test earlier in the year when I was on 4mg and it showed my adrenals were working normally. But I know some would say that doesn’t exclude adrenal fatigue, which is why I kept taking the Adrenal Support. But I will consider your advice.
The issue with the Synacthen test is that yes, it tells you that your adrenal glands can work given the right signals. The test replicates the hormonal message that comes from the pituitary gland to produce cortisol. It doesn’t tell you if the rest of the process works, like whether the brain is registering the low cortisol and if the feedback works and if the message gets to the pituitary gland. It also doesn’t tell you if your glands will work reliably. I had an ok but not brilliant result at 4mg but if I over did it, I couldn’t cope. By the time I was at 1.5mg and feeling much improved, it was much better. The system needs to be able to work on its own in all parts. It took a good 18 months after stopping Pred to feel like I was stable. It can be a slow process that you can’t short circuit.
There is no such thing as "adrenal fatigue" in the sense most of the sites about it claim. Your adrenals don't wear out - the production of cortisol was suppressed because of pred but that is like the central heating doesn't produce heat when the thermostat senses the wood burner is going well - for central heating read adrenals and and for woodburner read pred tablets. What the synacthen test doesn't show is whether the rest of the feedback set-up is running smoothly - like your car needs all the electrical systems to be working even when the battery is fully charged, If a connection has come adrift, the engine won't turn over. But that is also a question if it not only being in working order but the computer working too. That takes time to wake up and get all the bits in step with one another.
This link contains the usual advice for dealing with a flare -and although your attempt last time seemed to work at the time, I’m guessing you didn’t get things properly under control before you reduced back to 2mg,
The fact that you are still recovering from procedure probably hasn’t helped. So maybe try again -following advice, going up to 7mg and dropping in 2 stages (with a week at 5 or 4.5mg) to 2.5mg rather than 2mg. It might sound persnickety, but as many know at low doses 0.5mg can make a big difference
Hi Seraphina - so sorry to hear your news, l think SnazzyD wanted to know how you got from 5mg to 2mg & over what period?
Having a Lumpectomy or any Surgery can take it out of you; first you need to address your PMR symptoms, are you taking any pain Meds for the breast pain? Once you are over that then consider continuing your reduction, do you have a Rheumatologist & are they aware of your Surgery?
I had my Pred increased following Surgery by my Rheumatologist & she rang me several times to see how l was getting along.
Snazzy & l have experience with BC so understand how you might be feeling.
Thank you for this. I was reducing using dead slow method One mg over five or six weeks. I had an online Appt with the Rheumatologist and told him I was having the surgery but he didn’t suggest anything. He told me to try three for a couple of weeks then down to two, but I don’t think it was high enough to really get on top of it. Id forgotten all about the sick day rules. CFS does that to you. I take the occasional Paracetamol but it doesn’t really help.
Breast Pain maybe better managed for a few days with regular pain Meds to get on top of it.
You may have to increase your Pred as suggested by PMRpro as below & l would recommend dropping by 0.5mg drops from now on as it’s too big a percentage of the current dose otherwise.
You’ve a lot going on & PMR can be improved which will help you feel better.
There’s no way I could do 1mg drops so did 0.5mg all the way from 10mg. The lower I got the slower I got which gave my adrenal function time to catch up.
You maybe only need 2.5mg - but 2mg is obviously slightly too low, not all the daily inflammation is being mopped up and it building up to cause problems. Try that before getting totally despondent. You might need a bit of extra pred for a few days to clear things out a bit.
But really, you should have had a boost of pred for the op and recovery period. Your adrenal glands would normally do that to help you recover, in the absence of adrenal function you have to use the Sick Day Rules. And I suspect that didn't help either.
hi. Thank you. I’ll probably try going to 2.5 for a few days and if no use or it gets worse I’ll go to 7 till it’s completely cleared. Then drop in two stages as Dorset Lady suggests.
I do hope your breast surgery went well and the soreness goes away soon. It is lucky you caught it so soon. Personally what I would do is up my pred by 5mg for a week or so then drop back by 4mg and see how things go.
thank you Piglette. The surgery did go well, but I think they assume you’re so glad it’s been ‘caught’ that they don’t really say much about the after effects.
Have you had a follow up check up with your surgeon , or at least contacted them by phone to tell them about the longer period of tenderness and pain you are having in the breast in comparison to the symptoms you had after your previous surgery?
It would probably be advisable to make that contact and have a proper face to face discussion and examination with the GP or the Consultant so you have a full spectrum of medical advice related to the effects before you make the choice of how much you increase your steroids and for how long. Don't forget the Neurological pain associated with ME and Fatigue may also be playing a part in your current symptoms and a steroid increase won't help that. You may find you need a temporary increase in any medication you take for that condition at the moment as well or before the increase of steroids.
A complex of chronic conditions needs a structured change in all of your treatments.
Anyone on the forum with experience of other illnesses , injury or surgery with PMR/ GCA and on steroids will have had the experience of finding it can take a lot longer for things to heal , and that the new trauma can cause a flare up of the PMR. Its part of the reason that these short term emergency steroid increase protocols are in place. For other illnesses using steroids they often have comprehensive protocols promoting the temporary increase so it's easy for patients to follow.
Some conditions may mean that you need to take some more consideration before the emergency increase though, things related to surgery or cancers may come under that bracket for some individuals.
Have you found any relief to the breast pain and tenderness from also taking paracetamol through the day and using other self care techniques to reduce the swelling ?
Its likely you would need to keep these measures and moderate your upper body activity a lot longer than you did previously. Getting the added pain in control that is caused by the surgery could be enough to mean that you could hold back the flare of PMR elsewhere.
Taking the steroid increase with the added support of your medical team could be the last piece of the jigsaw . Be prepared though that you may find that when you try to reduce back to your original lower dose you may not be able to go back to that , and you will be on a higher dose for some time than you took before the surgery. Its an unfortunate part of the course for many that their taper will take a lot longer if they suffer other health problems or have surgeries during their PMR treatment. The recovery time from other conditions and long flares can cause the length of time in recovery from PMR can increase too. Its good to be prepared mentally for that possibility.
Out of interest , what are the ingredients of your herbal Adrenal Support mixture?
I'd be inclined to agree with Snappy about removing it from the mix , at least for the moment until you are definitely in the Adrenal Phase of your taper because you can't be sure how it will effect how well the Adrenals respond to the lower dose.
That is unless , it is only a mix of vitamins and minerals, which would mean it is little different to a standard combined supplement , in which case a cheaper alternative is probably available.
If it contains other potent herbs though , it is worth checking how they effect other conditions or the efficacy of the drugs you are on. Many herbal supplements can cause a reduction in how well your medication is absorbed so it's important to do find this out before using them in case it means you will also need to increase the dose of prescribed or other OTC drugs.
hi. I replied to this a while ago but can’t see it here so here it is again. I have seen the surgeon again and he thinks everything is going okay. I’m in touch with the Breast Care nurses and they are brilliant. But I still feel anxious as I really don’t want to end up with a chronic breast problem. I feel more reassured after hearing the responses on here.
The Adrenal Support mix is this
Adrenal Support comprises a blend of herbs - liquorice, ginseng (Siberian and Chinese) and Suma/Pfaffia, alongside iodine, and importantly, good levels of pantothenic acid (vitamin B5). Pantothenic acid has many functions in the body, of particular relevance to the adrenals is that it contributes to the normal synthesis and metabolism of steroid hormones and the reduction of tiredness and fatigue.
I think I’ll stop it, if only becive noticed the Licuorice. I’m not on any specific treatments for the CFS/ME as there just aren’t any. The NHS focus is on pacing and managing the anxiety depression and insomnia that usually occur. I don’t actually have any pain with it.
Just out of interest are you also on any hormone treatments or have you been advised to reduce any types of hormone in your diet like eostrogen or progesterone?Do you take Vitamin D , K2 and Magnesium?
Do you take a combined vitamin and mineral supplement each day ?
Have you had tests that would give you a baseline or deficiency result in the last six months?
Getting tested for Vitamin D , Vitamin B 12 , Kidney Function , Full Ferritin Panel and Full Folates can help you address the more common changes you need to make to reduce the symptoms of Pain / CF and the Fatigue and Autonomic symptoms you can have during the Adrenal Phase of your taper.
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