Update Pulmonary Embolism? +Plaquenil + Antiphospholipid Syndrome + MM + Fatigue relief

[FjordBCRF]

This might be a long one. This past month as brought a lot of stuff . We went on our London honeymoon, the week after we got home my grandfather with dementia passed away and I have been undergoing more specialists, tests, more specialists, and more tests.

Ive posted here and there, but up until recently, I have Ehlers Danlos Syndrome, POTS, Raynauds and degenerative disc disease.

Two days before London, I had a big muscles spasm in my back that unfortunately turned into some of the worst back.spine pain I have had to date. Made for interesting travel, but we still saw lots and enjoyed ourselves.

The DAY we left for London, I had to see a hematologist/oncologist due to concerning low platelet counts and testing positive for all antiphosohlipid antibodies in July. He ran a TON more bloodwork and I came back again positive lab wise for antiphospholipid syndrome (APS). Its an autoimmune blood clotting disorder and you have to have positive lab tests so many weeks apart to make sure its not a fluke. I passed with flying colors. It usually gets picked up clinically when women have miscarriages/pregnancy complications Ive always known kids weren’t for me so no clinical symptoms for me thankfully. Since I dont have both, my doc put me on a low dose aspirin for now after downgrading that from initially thinking xeralto thankfully.

Along with that bloodwork came a bunch of positive/abnormal antibodies for lupus and some other weirdness. On Friday last week, I saw a nephrologist for high creatine numbers though that has been pretty consistent over the years. She said she didnt want to slap the chronic kidney disease diagnosis on me yet, but sent me off for a kidney/bladder ultrasound and will have bloodwork to tack on with my now quarterly bloodwork. Ultrasound came back good thankfully so Ill take that. I see my rheumatologist again at the end of Jan to go over all these new findings and see if I get yet another new diagnosis.

All that to set the stage. The past few weeks I have been down and exhausted. Moreso than I ever remember feeling. Im sure Im processing my granpdas death even though we lost “him” a long time ago. My family is doing well and the funeral events all went as smoothly a possible which Im thankful for. My grandma feels “free” now from being his caretakers which I think is a good thing for her. Work has been higher stress than normal with a new manager thats a pain, but I have made some headway there so that is in part mitigated for a bit anyways.

When I got the disc degeneration disease diagnosis this summer, I got my medical marijuana card (yay OH for finally passing the rec law ). Prior to that, I smoked weed a couple times a few years ago and didnt like the smoking part so Ive gone the edible/tincture route. I started this in the evenings instead of a muscle relaxer and much prefer it (all doctors are aware). I had mainly been using hybrids or indica strains which do give me a sleepy effect (not something I take if I need to be “with it”.

With everything coming to a head, I decided to give sativa a try. I had previously steered away from it because it’s often described as an upper, which usually dont work well for me having/being medicated for heart palpitations. Im off this week and started taking it during the day to see what would happen. NIGHT AND DAY DIFFERENCE. I don’t know exactly what it is helping with…chronic fatigue for sure, brain fog, maybe some level of depression?? If anyone else has experienced anything like this, I would love to hear your thoughts…any insight into what exactly its helping with would be helpful and its really hard for em to describe it. Also interesting, Im much less inclined to snack. I think in the past I would get some (false) relief when I ate, so watching calories was always on my radar.

Ive gotten more done in the last three days than I have in what feels like a year. Prior to the sativa, even just thinking about all the things on my to do list was overwhelming let alone actually doing anything I didn’t HAVE to do or REALLY want to (like spending time with my fluffy fjord). I wish I could pinpoint what it’s actually helping with. Without it, I felt like I had physical pressure in my head weighing me down, but not headaches. I never felt awake (I do with the sativa). My brain felt dull and everything thing (even little) felt incredible draining. Now, it feels like the light is on! It’s probably got to be a combo of issues.

In any case, I am more ahead of the holidays than EVER. I just addressed envelopes for Christmas cards (hopefully the COTH list will be coming soon)! Looking forward to secret Santa shopping, got a jump on family Christmas shopping. I have meal prepped several recipes to get us through Dec without worrying about staying on top of healthy meals at home, and I has 4 recipes for baking for the holidays Im getting ready for. It’s wonderful to feel that “normal things” don’t take every last ounce of what little energy I have.

Thanks to anyone still reading. I know I have a lot more ahead of me in my chronic health journey, but it’s nice to share something positive in that space. The only other break Ive gotten is when I started on beta blockers in 2014 for the heart palpitations that immediately relived the choleric headaches I was getting due to slightly elevated BP and resting heart rate.

[RMJacobs]

Wow, that’s a lot you have going on. I certainly can empathize, since I share some of those things. It’s not a club I ever wanted to join, for sure, but we just make the best of the hand we’re dealt.

I’m glad the sativa is working for you. Nearly the minute Colorado legalized marijuana, I tried a couple of different sativas to see if I could get some relief from chronic pain. Unfortunately, it didn’t do anything for me. Maybe it’s because I was overdid it in the 60s and 70s? Kidding, I think. Some prescription meds do give me enough relief to keep me doing the stuff that really matters to me. I wish it helped more. My husband is convinced I’m going to overdose because of the combination of prescribed meds, but I am very, very careful to stick to taking only as much as I am permitted.

I’m ahead of you in the journey of some of the stuff you have going on, so if there’s any way I can help you, be it sharing my experience or just commiseration, please let me know in a post or PM.

Jingling for continued relief for you!

Rebecca

[3PonyFarm]

So sorry you are dealing with all this. I hope your doctors can get a handle on everything and you can start feeling better. Take care!

[Jackie_Cochran]

Well, it turned out that decades ago I was really self-medicating for my then unsuspected and undiagnosed Multiple Sclerosis.

Indica (the more expensive Columbian weed) did NOT work well against my MS. I would get this sort of downer high and feel sluggish.

With Sativa (cheap Mexican weed) I was alert, my body worked SO MUCH BETTER and I felt a lot happier. I did not get as “high” but it was so much more pleasant. I also did not end up dragging around like I was dead.

If I had to go back to using marijuana I would only want sativa.

[Jackie_Cochran]

It has been years since I heard this, but someone told me that the difference between sativa and indica was that sativa had more Gamma Linoleic Acid (GLA) in it than indica.

GLA is absolutely wonderful against arthritis pain. It is an anti-inflammatory that worked really well on the osteoarthritis in my fingers. The best sources are Evening Primrose Oil (available at Walmart in the women’s supplements section), Black Current oil and another one that I cannot remember right now.

[FjordBCRF]

@Jackie_Cochran

With Sativa (cheap Mexican weed) I was alert, my body worked SO MUCH BETTER and I felt a lot happier.

This is pretty much exactly how it makes me feel too. It’s honestly shocking to me and I hope it is something that can be sustainable!

@Jackie_Cochran

someone told me that the difference between sativa and indica was that sativa had more Gamma Linoleic Acid (GLA) in it than indica.

I know VERY little about weed and drugs in general. I was the only kid in my class that missed out on the DARE program and I was always in the dark on anything drug related lol. With that said, I started digging in to educate myself on medical marijuana and the drug in general. Scientifically, they are trying to get away from even using the terms indica and sativa as any type of descriptor, which at least for me as a n00b I have found to be helpful to start, but that each unique, specific strain of weed has its own terepene profile. There are a dozen plus terpenes and they all can help different things and how they impact the human endocannabinoid system, which was something I had never heard of. Its unfortunately harder to get that info with edibles, but I did find a brand my dispo carries that does include that info.

There is a cool podcast I got into called Smoke 'n Science which is hosted by two PhD chemists who both smoke and study cannabis. It looks like they last updated Oct of 2022. I still found it to be very helpful starting to learn about everything.

I really hope more research goes in MM. My primary and my nephrologist are happy that its been helping me take less NSAIDs and getting better quality of sleep if nothing else. The sativa results are extra icing on that cake. I told DH our travel plans are going to have to be in places where it’s legal so I can actually have the energy and get to enjoy myself and not drag myself through it.

[Mouse_amp_Bay]

Most weed strains are hybrid, not really a true ‘strain’. The two primary ones are indica (‘in ‘da couch’) and sativa. Indica is suppose to be relaxing/help with sleep; sativa helps with focus/energizing (i.e. for people dealing with anxiety, depression etc.).

Full blog at this link, key excerpt below.

Some further information from a local medicinal marijuana specialist clinic:
As medical cannabis may be used to treat a wide array of symptoms it is important to understand what is being consumed. Indica dominant cannabis strains generally grow short and bushy with large, wide leaves and a short distance between nodes. They also tend to produce a higher yield as compared to sativa or hybrid plants. Medicine that is produced by the indica plant tends to have higher CBD levels and lower THC content.

Indica strains are well known for their “couch-lock” effects that produce feelings of relaxation, drowsiness and calm. Medically, indica strains are used to manage symptoms such as edginess, tense muscles, nausea, acute pain, decreased appetite and feelings of depression. Indica strains also increase dopamine in the brain which is a neurotransmitter responsible for pleasure control.

Indica strains may be more appropriate for night time use as they produce drowsiness and sedative effects. Common indica strains include: Northern Lights, Afghani Kush, Blue Mystic, and O.G. Kush.

Alternately, sativas are well known for the euphoric and energizing feelings they produce. Sativa strains tend to be higher in THC content and lower in CBD. They grow tall with thin, narrow leaves and large internodal spaces. Sativa plants tend to produce fewer flowers than their indica counterpart and take longer to grow.

Sativas are recommended for daytime use as they produce energizing effects. They are generally utilized to treat anxiety, depression and chronic pain as well as increase focus and creativity. Sativa strains also increase serotonin in the brain, which is a neurotransmitter responsible for the regulation of learning, mood, sleep, anxiety and appetite.

[FjordBCRF]

@Mouse_amp_Bay

Sativas are recommended for daytime use as they produce energizing effects. They are generally utilized to treat anxiety, depression and chronic pain as well as increase focus and creativity.

Im still processing that the sativa is significantly helping what I think is simply chronic fatigue (either on its own or a comorbidity of something else). I think the last couple years my CF has worsened, so slowly that it was barely noticeable. Realizing that I hadn’t had the energy to even watch a Christmas movie and feel cozy vs wondering how long Ill make it until I fall asleep was, well, sad. I watched Elf, A Christmas Story, Love Hard, and Christmas Vacation this week! With a nice warm heating pad and hot tea. And I enjoyed the snot out of it. I felt like a kid. This morning getting up for work, I woke up and was awake! That is generally unheard of for me. I felt like I was ready mentally ready to go back to work and I have been loathing work now for months. A week away from my honeymoon did not give me that same refreshment.

I have noticed it helping with mild anxiety. I left the heating pad on while we went to the gym and pre-sat, I would have had had to go turn it off and cut the gym short. Instead I just acknowledged it, figured it would be ok, and turned it off when we got home. I also let DH know to double check me on that! There were a few other instances I noticed I was much more thoughtful vs reactive too.

The crazier to me thing is, I’ve able to untangle where my physical limitations start/stop being untied from the mental fatigue. The fatigue is actually worse and far more debilitating than my day to day physical discomforts. Pre-sativa, I forced myself through at least 2 weight lifting days with light cardio. Most weeks I got 3, days, but not all. Plus 3-4 days of riding. This past week I did my 3 weightlifting days at home, 4 days of yoga, and we joined our local rec center so I had a swim night there and a weight day there yesterday. Plus riding and horsey stuff. I physically am feeling not too bad. I wonder if Im also getting some inflammation reduction with the sativa.

Im still in shock!

[donnairenephoto]

Fellow rider with EDS here <3 Something that I was thinking as I was reading your post is whether or not you are neurodivergent or have ever been evaluated for this? I found out that I am a few months after my EDS diagnosis and it made SO much sense as to why I was experiencing my most extreme flare-ups whenever I would travel, especially plane travel. It’s extremely stressful for neurodivergent people AND on EDS bodies because being static for so long causes muscle spasms.

So I take serious prep anytime I have to travel, pack in advance, get there with lots of time, and eliminate as much stress as possible. And I always book an aisle seat so I can get up and move as much as possible!

[FjordBCRF]

@donnairenephoto

Fellow rider with EDS here <3 Something that I was thinking as I was reading your post is whether or not you are neurodivergent or have ever been evaluated for this?

I’m positive I am, somewhere on the higher functioning end. My mom (retired RN) thought when I was very young I was autistic (I say this because it was well before anyone started talking about it being a spectrum). The most obvious thing I’d do was anytime the dishwasher or garbage disposal went on, I’d start spinning in place…for seriously extended amounts of time. Come to find out that’s a form of stimming. I did that well into my teens and early 20’s, until it started making me dizzy

I have misophonia with certain sounds (snoring is the worst) and have light, sounds, and tactile sensitivities and always have. I didn’t wear jeans until almost 5th or 6th grade because I hated how demon felt. Stirrup pants baby!!

Now that information is so much more abundant and accessible, it seems I spent most of my life masking. I learned how to do it well, but of course, it’s exhausting. I also like routine and something that’s a little change for most people can throw me off big time. I think for me, the barn and horses was one of the only places I never HAD to because it felt like I fit in.

I don’t know how worthwhile pursuing a diagnosis would be for this other than it is curious that being on the spectrum is seemingly very connected to things like EDS. On the other hand, having it formally diagnosed wouldn’t be the worst thing as my ADA paperwork evolves for accommodations at work (working full remote is the main accommodation).

[donnairenephoto]

That totally checks out then! I got a formal diagnosis but it was so expensive ($3500) so I don’t think it’s worth it unless finances aren’t a concern. But yeah, it’s a balancing act trying to accomodate the neurodivergent needs AND EDS needs, especially in modern society where everything is working against us!

[FjordBCRF]

I had my 6 month check in with my rheum on Monday this week and in addition to the Aspirin, my rheum just put me on Plaquenil for the APS to hopefully get my antibody numbers down, because they are awfully high. I also switched from the combo birth control to the mini pill which carries less clotting risk so Im hoping that won’t be a big adjustment.

I just started Plaquenil two days ago at a lower 100mg dose (vs the 200mg). I’ve always been sensitive to feeling meds and maybe it’s placebo, but I immediately started feeling like I had taken 600-800mg of Advil. I am so much less stiff and achy. I know it takes longer to build in your system to really see anything on the bloodwork side, but Ill take the otherwise anti-inflammatory properties! The type of discomfort that it’s helping is from my EDS so that seems like a double (hopefully) win.

Has anyone else had experience with Plaquenil? Some of the side effects seem to be more severe than I’m used to, I’ll be seeing an ophthalmologist now as well. I’m a little worried come summer about the photosensitivity effects; I have a hard time in sun/heat…BP goes up, I get headaches and super fatigued. I also burn easily. Needless to say, I already take precautions like staying out of the heat of the day, wearing long sleeve UV shirts and hats so thats not new.

Also happy to report, the MM is still helping tons with the fatigue!!

[RMJacobs]

Plaquenil was the first med I was on for RA, right when I was diagnosed in January 1998. I made the mistake of taking my first dose on an empty stomach. By the time I got to work that day, I was vomiting into my trash can. That thrilled my coworkers, of course. My boss at the time had MS, so she understood.

Once I figured out I needed to eat when I took it, I didn’t have any side effects. It prevented joint damage but didn’t do anything for pain and stiffness, so I wasn’t on it for super long–I don’t think it was more than six months. I never had a photosensitivity issue with it (and I’m allergic to most sunscreen, so I rarely use it in spite of being in the sun a lot).

Seems to me I did two eye exams while I was on it, so maybe I was on longer than six months. After a while, my memory of the earlier meds gets hazy. I went from plaquenil to sulfasalazine, which also didn’t help much, but I did have photosensitivity with sulfasalazine. I ended up staining on my face that looked like five o’clock shadow. It ultimately went away, but I hated it while I had it.

Rebecca

[FjordBCRF]

@RMJacobs

By the time I got to work that day, I was vomiting into my trash can. That thrilled my coworkers, of course. My boss at the time had MS, so she understood.

Oh no! I’ve had the barfing at work experience once before, not fun. The pharmacist did warn me to take it with food.

Thanks for sharing your experience, it sounds like it’s the first medication for a lot of people with autoimmune conditions. I have my next blood draining this upcoming Monday so I wouldn’t expect to see any changes there yet, but maybe by the next quarter. I sincerely wasn’t expecting any immediate physical relief, but boy I’ll take it. It feels like my muscles are melting!

I need to get the ophthalmologist scheduled to see where my baseline is. One of my barn friends is a dermatologist and is quite familiar with plaquenil; she told me that the eye damage is more associated with the class of meds vs plaquenil itself to a decent degree and she’s not seen anyone on it have the eye side effects. Anecdotal but made me feel a little better.

[RMJacobs]

The opthalmologist whom I saw for my baseline and at least one more plaquenil exam also told me she’d never encountered eye damage from it, and she said she did a lot of those exams. Seems to me my rheumatologist (whom I still see) said the same thing. A lot can change in the 25+ years since I was on it, but I’m hoping eye problems are still a rare side effect.

These days, I miss a lot on the visual field exam, but that’s not because of plaquenil. It’s from hitting my head too many times. Not recommended!

Rebecca

[Fiesta01]

@FjordBCRF

Has anyone else had experience with Plaquenil?

I’ve been on Plaquenil for my lupus for 30 years. I’ve not had any problem with my eyes. A couple of years ago, my ophthalmologist increased by exam schedule from once a year to twice a year because of my age and the fact that the effects on the retina are cumulative. Next appointment is next week.

I’ve never had any other side effects but do take the Plaquenil with a meal. It has kept my lupus symptoms in check well. I’ve had very occasional flare-ups over the years, but they have all been mild and very short-lived. I could usually tell what caused the flare-ups. (Out in sun too long; stressful period; over-doing physical activities without enough sleep).

Sorry you have to deal with this.

[FjordBCRF]

I hope your appointment goes well!

I was able to get back to the gym this past week with being on the Plaquenil so that’s been a win too. I was doing fine up until I got Covid in December and that really messed with my physical fatigue so I backed down to mainly just restorative yoga, barn, and riding. I woke up on Sunday and after breakfast asked DH if he was up for lifting; I think we were both surprised I was feeling up for it. I felt good afterwards too and did a 3 mile ride later that afternoon.

[Fiesta01]

Good to hear you’re feeling better. It’s an excellent idea to only do what you feel you’re up to doing on any given day. With lupus, I have learned to listen to my body and believe what it’s trying to tell me.

While I was on vacation last Apr, we were walking 10-15 miles a day exploring. A day arrived when I woke up and just knew I needed to have a rest day. So, we scrapped our plans, slept in, and watched a couple episodes of a French TV series we were binging.

Then in the afternoon, we walked 2 minutes down to the beach and slowly wandered around looking for shells for a couple hours. The next day, I felt rejuvenated, and we picked up with our plans. I know if I had continued to push myself, I would have had a lupus flare right in the middle of my beautiful vacation.

Here’s to your continued success with Plaquenil. It has been a life-saver for me.

[beau159]

@FjordBCRF

Oh no! I’ve had the barfing at work experience once before, not fun. The pharmacist did warn me to take it with food.

Thanks for sharing your experience, it sounds like it’s the first medication for a lot of people with autoimmune conditions. I have my next blood draining this upcoming Monday so I wouldn’t expect to see any changes there yet, but maybe by the next quarter. I sincerely wasn’t expecting any immediate physical relief, but boy I’ll take it. It feels like my muscles are melting!

I need to get the ophthalmologist scheduled to see where my baseline is. One of my barn friends is a dermatologist and is quite familiar with plaquenil; she told me that the eye damage is more associated with the class of meds vs plaquenil itself to a decent degree and she’s not seen anyone on it have the eye side effects. Anecdotal but made me feel a little better.

I’m very late to the party on your thread but just wanted to comment on Plaquenil’s effect on the eyes.

(With that said, you do have other systemic conditions where I would hope you are getting regular eye exams anyway, particularly the Ehlers-Dahlos.)

Plaquenil can cause a VERY RARE but VERY SERIOUS side effect to your vision, called Bulls Eye Maculopathy. If you are on a “normal” dosage, it really impossible to have any effects before 5 years, but that’s the time when you are getting your baseline testing build up so your eye doctor knows what is “normal” for you. You will need a visual field test as well as an OCT (optical coherence tomography) test every year. Again, it is a rare side effect. However, if you are unlucky enough to develop it, the visual damage is irreverseable, so that’s why it is watched so closely and why rheumatology is aware of it, because they’ll pull you off it if there is any sign of the Maculopathy.

Absolutely fine if you want to see an ophthalmologist but do know that most optometrists can watch for this as well, just FYI. I’m an optometrist myself and I regularly see patients on plaquenil.

[FjordBCRF]

@beau159

Absolutely fine if you want to see an ophthalmologist but do know that most optometrists can watch for this as well, just FYI. I’m an optometrist myself and I regularly see patients on plaquenil.

Thanks for chiming in! I do see an optometrist regularly for glasses/contacts. A good friend of mine had to see an ophthalmologist not that long ago and really liked him. I have my first appt with him this Thursday to start getting my data. I was very much under the impression that the ophthalmologist was the way to go vs optometrist, but that is good to know that is an option too! I think I will probably get better insurance coverage with the ophthalmologist too.

I have historically been very sensitive to vision changes, my optometrist at the time was really surprised and I had a lot of itty bitty tweaks to my rx over the years. That seems to have leveled off now for many years but if I notice something like that again I will be on the horn.

Another question! Anyone out there ever have a pulmonary embolism? With the APS diagnosis I have been doing my due diligence and learning more about signs/symptoms. I came across this yesterday:

and all the symptoms minus the coughing blood, I have had before and they were chalked up to panic/anxiety attacks. I really dont have anxiety or a high degree of it so it was always weird to me. There is a pretty well informed APS group on Facebook so I posted there and sure enough, several members said they had the same thing and it turned out to be PE. So now I am wondering if I have in fact had an “event” or two over the years. If it happens again, guidance is get to the ER to rule that out.