Hi All - I just wanted to say that I am so excited. I am finally getting to the point of really being "me" again. I have a GP appointment on the 10th of April, and I am really hopeful that she will agree that I am in remission, at least for RA. I will start working on the Sjogrens specifically then.
Here is one of the main reasons I am convinced that I am in remission. I spent Sunday for about two hours helping my sweet hubby set up the wood rails, and load the first layer. Then I spent another four hours over two days actually trucking the wood in a wheelbarrow from the other side of the large yard to the rails and stacking it. My DH came home early and helped me stack it for a couple of hours, and we finished it.
So the amazing parts of this story are: First, I was able to do this lifting from the piles / ground into the cart, move the wheelbarrow - fully loaded, lifting from the cart onto the wood pile; Second: I didn't die of pain in the nights; third, even after three days, I am just barely sore today. I just really wanted to tell people that would understand why I am so excited.
I hope you all are having a wonderful, pain free day!
Ha ha - Thanks Allanah - We have had to have three of our 80 foot tall and 5 - 6 foot in diameter trees taken down right before and since Hurricane Matthew last fall. It is has been mighty expensive, and of course insurance doesn't bother with preventative measures. So we had the tree company give us the smaller diameter wood to split and stack. We actually have three sets of rails in the yard now about the same size. But this round was the first time I could work for more than an hour, and even then I would be in severe pain all night, and usually for a couple of days as well. It is like a miracle.
I used to tell my friends that it's annoying to be me, but right now, I am so happy I am.
Thanks Simba - I think it is from three primary things: Minocycline (15 months), change to a Keto diet (15 months), and having an infected tooth removed the 4th of January. I have also added some supplements in too.
Now I am going to see if my GP will let me switch to Doxycycline and work on the Sjogren's. When I can sleep less than 10 - 12 hours a day and still function well, and when I can get off of the Tramadol (I am down to only two a day for pain), then I will believe that I am in remission from the Sjogrens too.
I am so curious 😊Can you seperate RA and Sjogrens symptoms clearly from one another? So Mino does not have an effect on Sjogrens? How do you know that you are on remission from RA?
I am sorry if I'm too intrusive, so interested in how Mino works if this is something I need to try in the future. Thank You😊
There are six signs that the American College of Rheumatology (ACR) classification criteria (1981) lists for determining clinical remission which include:
•morning stiffness less than or equal to 15 minutes
•no fatigue
•no joint pain
•no joint tenderness or pain on motion
•no soft tissue swelling in joints or tendon sheaths
•erythrocyte sedimentation rate (a blood test which measures inflammation) less than or equal to 30 in females and 20 in males
They say that you need to meet at least 5 of the six. My last sed rate was 15, so the only things left on this list that I don't pretty much meet are the fatigue and pain. It makes no sense for the other symptoms to be clearing up and not those two. The fatigue should be clearing, but I still have to sleep long and long to be rested enough for the next day. Additionally, the pain is different now. My current pain is widespread and muscular, instead of being mostly in joints and bones. I am typing like a breeze right now without pain in my thumbs, wrists or fingers.
When I started reviewing what is happening with me, the dryness issues - eyes, nose, throat, skin are all getting worse (or I am just more able to notice them now without the worse symptoms of the RD).
The next section is just my opinion... In the Road Back Foundation FAQ section (roadback.org/faqs/), it talks about the differences between Minocycline, Tetracycline and Doxycycline:
Minocycline’s spectrum of activity is broader than that of other tetracyclines within the same class; it has a longer half-life and is classified as long-acting. Serum levels may reach two to four times those of more water-soluble tetracyclines and so less is needed to achieve the same result. Absorption of minocycline is also less likely to be affected by food.
Tetracycline and doxycycline have also proven to be effective for the treatment of rheumatic disease. Doxycycline achieves much higher tissue concentrations than tetracycline, while minocycline penetrates tissue far more effectively than doxycycline. Tetracycline is the least expensive and oldest member of this family of antibiotics. It is more apt to react with foods and should be taken on an empty stomach with a full glass of water, three hours before or after consumption of food (especially foods high in mineral content, such as dairy products). Doxycycline , (the second drug to be developed in this family) is sold in the United States under the brand names Doryx and Vibramycin (brand names vary internationally) and is often given to patients who do not tolerate minocycline well and sometimes to those with lupus.
Dr. Brown used a variety of different classes of antibiotics, depending upon a patient’s pathogen load and individual needs.
It also talks on the website about times when the Minocycline stops working and they switch the patient to Doxycycline. From there I went on to research Sjogren's and the rheumatologists are all using the same DMARDs as they use on RD. But that doesn't seem to be bringing that many people into remission. I started wondering if the doxycycline, since it works differently than the minocycline, would work on the Sjogrens. I did a lot of research and what I found was primarily anecdotal, but here one of the sources I found:
Q: I have recently been prescribed Doxycycline Hyclate. I read that people with a
history of Lupus should not take that mediation. What about Sjogrens? Should
people with a history of Sjogrens take Doxycycline Hyclate? Is it safe to do so?
I have had Sjogrens for many years.
Thank you for your response.
A: Doxycycline can be taken by Sjogren's patient's. I have used for arthritis and chronic sinusitis, as it blocks a pathway of inflammation (matrix metalloproteinase). Eye physician's use it for meibomian gland dysfunction (those red swollen eye lids). It also can have some promotility action, so can be tried in gastroparesis or GI dysmotility.
There are several more, but honestly, I didn't track them all, and as I said, many are just anecdotal. Some people report that it works, and others not. But considering all that has occurred, it just seems to me that it is worth a shot, and if it does not help the Sjogrens, maybe it will clear an additional bit of the RD with the changeover.
However, I am also doing other natural remedies for the Sjogrens too, like Borage Oil, Evening Primrose Oil and I just ordered some Black Currant Oil. If nothing else, maybe I will be better lubricated - ha ha.
As I said, this is just my deduction after much research, and a wing and a prayer too. Hope some of this makes sense Simba - Have a nice day!
Oh it is Marie. Just last night, while talking to my daughter she all of a sudden said, "Mom, your hands are shrinking!" I looked down and actually felt a slow draining feeling.
Its 8 am here, so I've just got out of bed and my hands almost look normal. I don't want to get too excited, but I can't help myself.
Fantastic. I am so, so pleased for you. It must be a great feeling . If your daughter is anything like mine, noticing your hands shrinking would have filled her with joy and excitement too. Sometimes I don't think we fully appreciate how are kids can worry for us.
Yay! Well done you. It looks lovely too, very neat, as in neat & tidy! Thankfully my days of wheelbarrowing logs for the wood burner are behind me. When I think I used to do it twice a week from our nearest neighbour's lower garden & up an unmade road, boy was I relieved how much easier it was once I was on the flat of our land! 😳😰
Thanks so much no more heels - We don't really need it for heat per se, but we love the fireplace throughout the fall and winter, and even sometimes the spring. It snowed here on the Spring Solstice - ha ha.
Wow, that is a rough way to get wood. The lower garden is bad enough (I presume you had to go up hills?), but up (again) on a rough road is hard. I have to watch the ground when I am moving wood because the barrow tips - I would probably be terrible on an unfinished road - ha ha.
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Did it really snow in your State? I never knew you got snow there.
The weather has been unusually crappy here. I now have a lake in my back yard.
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What a stupid statement. Of couse it snows where you are lol
I misplaced your State with South Carolina lol
I've never been good with directions
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Ha ha ha - I am geographically challenged at times too! We don't get lots of snow usually, but there are times
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lol I'm geographically challenged too. In my city the mountain ranges are North, so I grew up knowing this.....but a few years ago we drove to Saskatchewan and I couldn't figure out which way was North. Hubby couldn't stop laughing because I keep turning my head searching for the mountains. Duh, no mountains in the Prairies lol
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Yeah - I've lived in the same place forever, but I still have to stop and think of what direction is North - S/B automatic by now - ha ha
Ours were from felled trees too & the neighbour had the machinery to cut them into manageable chunks, they were what I wheeled up the road & yes it was quite an incline, I was very well controlled back then! It was the old road only used by us & 2 other neighbours down the valley but not safe to drive down as the sides had eroded in places & rather large rocks jutted out in places so only suitable to use on foot.
The weather's been weird lately here too, I guess snow is unusual so late for you?
Eeks - That sounds double tough (the road). Yeah - we don't get a great deal of snow most of the time, but there have been times that we have gotten 16 inches or more. Mostly for us, it is the cold. I told my DH that while Virginia is beautiful the rest of the year, in the winter it reminds me of a gray, soggy lump of lambs wool or something =)
Congratulations Caeryl......it's such a boost when this happens.....long may it last !
Where are you in the US....it looks lovely?
I'll think of you on 10 April,as I sit having my RTX infusion. Second course of treatment, first just wearing off, but have felt better over the last six months than I have for a long time! But I still couldn't heave logs around like you did on Sunday!
Hi AC - I am in Virginia - North of the North Carolina line and about 40 miles from the beach. We are starting to get green, but still have freezing nights sometimes, so I haven't worried yet about cleaning up the yard and garden. Although I did notice the mint bed is in need of cleaning soon since it is growing already =).
I will be thinking of you too on the 10th. I hope your next infusion is as effective as the last one. Few things are better than being pain free.
I have spent the whole day ironing. I couldn't do any with my broken arm, so I had 20 Pillowcases, 6 double top & bottom sheets & 3 duvet covers, plus all the laundry from my trip to the Canary islands!
I usually get a girl who irons professionally to do it when I have a lot like that,,but I just had a spurt of energy this morning & just kept going...my right wrist is now in an ice pack.....I'm using the dictating thingy to write this!
I know...everything is non iron these days- but I like my bed linen ironed & I normally only do,it every 7/10 days.....but it's almost done now & my bedrooms look like sale in a Chinese laundry!
The only place I know in Virginia is Ronoake (?)...., lovely in the Summer, but really chilly in Winter.
I'm missing the Canarian sunshine, I hope to go back after 24/4 if both infusions go smoothly.
Our PM signed the Article 50 today to let the UK leave the EEC.....momentous day! I wonder where things will be this time next year?
I LOVE your technical term - the dictating thingy.... I'll have to remember that - ha ha
I used to iron all of our bed linens when I was growing up. They were all cotton, and I remember using a sprinkler to moisten them down, then rolling them up to let the moisture go throughout. Iron on cotton, hang to let finish drying and then fold. I was one happy camper when non-iron bed linens came along! =)
Roanoke is in the middle / western part of the state - I am as far east as you can go without hitting water - ha ha. It is very hot and humid here in the summer, but the winter can be pretty cold..
Hi Carey so glad your getting to remission and impressed with the log rails, we got a log burner installed last july by son in law and as we live in a detached 2 floor property he put the chimney through the ceiling and up in our wardrobe then through the roof so our room heats up as well, best thing we ever got and living in west coast of Scotland it comes in handy in winter xxx
Thanks Pop Smith - it is so funny - I used to work in San Francisco (lived in Virginia all of this time, so long commute), and it was almost always cool or cold there. I had a small fireplace that I would light when the fog rolled in and I couldn't see anything off of my balcony but soft grey clouds...
It sounds like you have a wonderful son in law, and clever too. I love a nice fire when it is chilly. The ambience is marvelous. Have a great day!
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You lived in Virginia and worked in SanFran? Now that is a commute!! You must of built up alot of air miles
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Ha ha - I had over a million at one point, but here's the rub - When you fly that much, you don't want to go anywhere by plane =)
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Yeah I bet. You probly don't ever want to step on a plane again. lol
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You are perceptive =). I haven't been on a plane since I stopped working across the country. No interest in ever getting on one again...
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You must love the east coast over the west coast to have traveled that distance for work. I totally understand that.
I love living on the west coast, I've visited the east coast, but my home is my home
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Yeah - Well, my hubby works with the navy and there is no navy there, so no job for him, and I love him more than life itself, so not much of a choice really. They paid me very very well to travel that much and I did it for over 8 years, but that was enough...
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Ah how sweet. I too love my hubby very much. I'd be lost without him. Aren't we the most luckiest women in the world to find our soulmates?
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Absolutely - it will be 32 years this month =)
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30 years for us on Aug 13 th this year. Boy oh boy we are lucky ladies!!
Hello CaerylUSA, Thats wonderful news! I'm so happy For you. Remission is a beautiful word. We're u on the mino for your RA? Also how do they diagnose sjogrens? I get dry eyes & mouth too. Also I get tired. But I don't sleep great at all. There's so much I want to learn about. What to do to get better. I've been searching for the cause like everyone & when we hear this great news, it gives us all hope. Thank u for sharing this. I have a app April 3rd with my RA doc & im going to talk to her about Mino & Find out what she thinks for me. Can I Also ask u how severe was your RA? Mines pretty bad. Put me in a wheelchair about a year & 1/2 & im still trying to get out of the chair. I'm on a good diet so my blood test inflamation marker was normal after eating a certain way. But my right knee is locked. Anyway, thank you so much for sharing. I send you many blessings🌻
Thank you so much Richgirl - Yes, Minocycline, 200 mg a day. Just know that you would need to start slow - like 100 mg every other day at first, because it will take you through a detox period called a Herxheimer reaction. Depending on how severe the detox is, it can take two - three weeks. Unfortunately, there is a tendency for people to feel like it is making them worse and stop. Just persevere until you can get to the 200 mg a day without the Herx reaction. You can get a lot of information for you AND your doctor on the Road Back website: roadback.org/faqs/
According to the test I was given (called a Vectra DA) I was severe and aggressive and that was after I had been on MTX for a year. I just couldn't make myself go on biologics. I was diagnosed with RD 6 1/2 years ago but didn't go for treatment for 4 years when I could hardly hobble any more. While not in a wheelchair I was in pretty bad shape. I started the Minocycline about two months after I got off of the MTX, and in about 3 months, I was starting to notice a difference. At the same time I changed my diet to eliminate grains, potatoes and other carbs, and switched to meat, dairy and veggies - no fruit but the occasional blue berries in my high probiotic yogurt.
Like you, my last blood tests all came back into range except my CR-P which was only about two points over, and I think that is from my tooth. I had a really infected molar for about two years where it had broken. Once it was removed I started feeling a little better every day and started sleeping better too. I do use Lunesta, Calcium Magnesium sleep minerals, Melatonin, L-Tryptophan and some homemade sleep herb formulas to help me sleep (not usually all at once - ha ha), and that has made a big difference in healing because I tend to heal in my sleep. Take a look at the FAQs - I printed some of them off of the website and took them with me. And like I told my doc - they give Minocycline to teenagers with Acne. I promised her that if I were much worse within six months, I would go back to the RA doc. If I were worse and not showing any Improvement in a year, back to the doc, and if I were not in remission within three years, back to the RA doc. She agreed with quarterly monitoring. I go today to get my new blood work done - fingers crossed.
As for Sjogrens, take a look at the Sjogren's Foundation site. It will give you loads of information: sjogrens.org/ There is a Sjogrens blood test they can do, they do a lot of the diagnosis anecdotally (through symptoms) like dry eyes, dry nose, thick phlegm (makes it hard to swallow while eating and even can cause choking when you sleep), dry skin, etc. Some eye doctors will use a litmus or some type of absorbent strip in the eye to see how many tears are generated, but mine never had to do that. He could tell by the scratches in my cornea.
Good luck with your appointment. Look at the sites and decide what you think for your situation, then print out the portions you want to take with you to discuss with your doctor. Have a wonderful day!
Thank u so much for your info. I've no time to write much. On my way to the dentist. I live in California. Hope I get to talk with you again. Have a great day as well.🌻
That's fantastic news - it's been so long since I've actually felt like me that I'm not sure I'd recognise her anymore😝 But to be able to do what you've described in your post,and barely be sore three days after is just fantastic - and like you say,it's only people in our little 'bubble' that truly understand the importance of those few chosen words. Here's keeping everything praying that you're finally seeing the light at the end of a very long tunnel.
Thanks so much Njk - I would maybe have thought I wouldn't recognize her either, but when she raised her happy little head and said "Let's do this!", and when I realized that I could do things the next day (without pain), and that I actually wanted to do those things, that was a major moment. And like you, one I wasn't expecting to ever see again.
Thank you so much for your kind words, and I wish you speed in your quest too!
Such good news from you, Caeryl and Suzanne - good to read!. I'm still waiting for the sulfa to start working [ and for the bad taste to go away] but you give me hope xox
Hi GranAmie - Never lose hope. Even when things have been at their darkest at other times in my life, they do turn around. Here's hoping for your sulfa to start working soon.. Fingers crossed (if possible)..
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Bit of good news for a change! 👍😀
Feeling good - inside and out!
Good news!
Good morning, I'm your body, I can hurt you. Have a nice day.
