New to this site

New to this site

Hi, nice to find the site. Diagnosed April 2015 and spent 7 weeks in pain before seeing rheumy. Started @15 mg and had to go to 30. Long year. Now at 6 as of yesterday. Tolerating the taper pain and feeling less fatigue. Wondering when I will shed the 30 lb weight gain. I'm excited to have made it to 6. Taking it slow. Wondering if my system can start running on its own. Pain is tolerable. I use CBD at night and it helps pain and sleep.

Looking forward to the support and info here. We are in this invisible disease together.

25 Replies

  • Hi Debra,

    Welcome - looking good!

    Quite a quick reduction from 30mg, bit concerned that you say you are "tolerating taper pain". Do you mean a few days of pain after reduction, if so, are you doing an overnight reduction or a slow plan. If overnight, then try a slower plan. That should alleviate the steroid withdrawal pain.

    If you are in pain all the time then I would be more worried, are you sure your inflammation is still under control - are you having regular blood tests to check? However much you want to reduce, please don't carry on regardless without checking everything is ok, otherwise you may reach the point where you get flare.

    Don't wish to deflate you, but you mustn't try and rush PMR, it takes as long as it takes.

    You need to be careful as well now you are down to 6mg, your adrenal glands should be kicking back in, but some people take longer than others.

    You will lose your weight gain, but you can help by cutting down on carbs, eating plenty of fruit and veg, and gentle exercise (not too strenuous), which I'm sure you do already.

    Take care, and don't push yourself too much. Good luck.

  • I was only at 30 for short time then made it to 15. It's been very slow. Sometime 3 months at same dose. Mostly shoulders and goes away within three days. I start down with 1/2 for a week then whole. I am aware of how slow I need to be now. Blood every month. Numbers great. Send rate 4 now. Never been high. Feel so much less fatigue. More like a normal person. Rheumy happy with my results. Want to work out again. Everything slow. You are so right. I think I finally lost my moon face!

  • Hi again,

    Your three days certainly sound like steroid withdrawal. I used to get that, but now I reduce over a five week period, first week a couple of days at new dose (not consecutive days, say Sun and Thurs), next week 3 days new dose, 3rd week, 5 days new dose, 4th week, 6 days and 5th week 7 days at new dose.

    I usually have one more week at the lower dose, and then if all okay start again.

    That way I find the body doesn't notice the drop. It works for me.

  • It's such a commitment isn't it. I plan my tapers with my schedule. Usually 4-5 weeks. Three days a week I'm blessed to take care of 8 month old granddaughter so I work it to where if symptoms are there I'm on a day off. My tapers at higher doses were rough. From now it's slower and really keeping stress low. I'm just so glad to be at 6. Couldn't imagine if get here. I take lots of supplements and eat a vegetarian diet. Very healthy. See Chinese Dr for brewed tea to help with adrenals and everything else. Today is a good day just lounging.

  • It certainly is a commitment, and neither families nor doctors seem to realise what a lot goes into dealing with this illness. It certainly teaches one to be patient, not something that comes easy to me. I used to want things done yesterday when I was younger!

    Ahh, the joys of getting older!

  • Agree. I've learned to let my body dictate what I can do. No one understands unless they are in it. Certainly turned my life upside down and at the same time my 7 year old grandson was diagnosed with Burkitts lymphoma and best friend reoccurrence of OC. In chemo now. My dog died, 9 month on a large addition and remodel to master bath. By the end of the year I didn't know if I could endure anymore. Took two weeks in Florida, I live in Santa Barbara, and detoxed from 2015. Did well. Rested. Looking at a good year. Grandson done with treatment and just very fatigued. Girlfriend just had second round of chemo and being aggressive feels horrible. It can always be worse so I'm feeling blessed.

    Where are you from?

  • UK - county of Dorset, about 10 miles from coast. Gorgeous part of the country.

  • Time commitment IS extraordinary - it's like a part time job. Who'd've thunkit?

  • No kidding. Always on guard. first thing in am reaching for pred. After a year most people understand when I tell them I can't do something.

  • We are having a snowstorm today. I told dear hubby that as my shoulder has not recovered from the last shovelling session (weeks ago, actually) I was not going to do any this time. I think he'd been waiting for me to go out and do a lot, actually, because I usually do - great "weightbearing" exercise for the thinning bones! Not this time. :D

  • So so true. It takes me 45 minutes to fill my supplement containers for two weeks!

  • good for you. self care. we are finally getting some rain, sprinkling a bit. People here stay inside when it rains it's so rare. We are in a drought. So spoiled. Lived in snow in Illinois before moving to Santa Barbara. Only if one skies do they know snow. Stay inside and keep warm!

  • Hi Debra, I noticed in your post you mentioned CBD. I tried it briefly but did not notice much effect except drowiness- had not thought about using it at night. That sounds like a good idea, especially if you find it helps with pain. What kind of dose do you need to take to get the pain relief?

  • I use the high CBD that has small mount of THC. Either the chocolate which I only use about size of dime, if thick liquid start with a rice grain amount. Really helps during tapering. It builds up in system. My saving grace. Goes under tongue unless you get tired of the taste, I put in gelatin cap, just takes a little longer for effect.

  • I jave only tried the oil which I get from my Dr's office, do 't believe it has any THC in it

  • I'm told it is better with a small amount of THC. Have an RX card and have many choices. I know it's not available to all. I live in California.

  • I live in Dallas, so will have to ask the physician I buy it from about that, and whether I have any other choices. Its funny he has been urging me to use it for pain relief and I keep telling him its not doing much, so maybe that is the reason. Appreciate your info.

  • you are very welcome. He may only have pure CBD. If you can get the mix, make sure to get indica thc. helps you sleep

  • Will remember that, many thanks!

  • My understanding is (and I have not tried it) that CBD is good for inflammation. I hadn't heard that it could be used directly for pain relief, just that pain would naturally be relieved as inflammation was reduced. In Canada right now we are in a sort of cannabis limbo. CBD itself is non-psychotropic, so legal, but hard to find except online, and the rest is all supposed to be available as a smokable product only with prescription from licensed suppliers. I'm not interested in getting high or inhaling smoke of any kind so I'm waiting for CBD to become more accessible.

  • Cbd is used for so many things. My best friend going through aggressive chemo uses it for nausea, sleep and pain. Small amount of THC does not get you high. It's the mix that works better. Although I have pure CBD from my Chinese herbalist. The chocolate is the best for me. I don't want the high or smoke either. Hope you can get it soon up there where you are.

  • I actually haven't tried very hard. I think if I'd been having more trouble tapering pred I would have tried harder. It's still there in the back of my mind as a possibility for the future if needed.

  • Hi again. Now I'm using a vape pen. I have 100% CBD oil and if I need more I can add some indica. This pen is awesome. No smoke and just push a button. I strongly suggest it if it's possible to get in each persons area. My Chinese and his family were murdered last month. Just as he was patenting a cure for cancer. Amazing man. Horrible for our community. Dr Henry Han. Cured many of all different cancers and disease. I was being treated by him. Really helped.

    I'm so glad I researched and got proactive early. Never did I think medicinal marijuana would be in my protocol . Miracles for inflammation! Spread the word🙏🏻

  • I was only thinking of the oil, nothing to do with smoking or vaping!

  • We all have our limits. Just get the pure oil made from a good source. You can put drops under your tongue. Not the kind to put in a pen. Anything is worth less inflammation!

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