Hand X-Rays Show the severe damage of Long Term Inflammation, Pseudo-gout & Chondrocalcinosis & More...,

After weeks of waiting due to mostly the COVID-19 Virus pandemic, I FINALLY got the copies of my Radiology Reports on the X-rays of my Left and Right Hands...

                                      So Here is the "NOT SO GREAT NEWS...

Well after (not very patiently awaiting) my Radiology reports on my hands.. as I figured the news is NOT great on my left hand...much like "gout" and "pseudo-gout" (which the pseudo-gout is one thing wrong".. I have chondrocalcinosis (calcification within cartilage) found which indicate long term inflammation..( I suspected for years I almost constantly had inflammation in the left hand especially between my joints in most of my fingers) from the RA and probably osteoarthritis also. That calcification is caused also by a build up of crystallization from certain minerals in the synovial fluid between the joints and I have a narrowing between most of them but the base of my thumb and my wrist under my thumb is moderate to severe from the X-rays and Exams by my PCP, Rheumy and Orthopedic surgeon. My Right hand also has much of the same, but it is not as bad as the left one is. Same thing the crystals that are causing the cartilage to calcify rather than be "like softer cartilage like your outer ear for example)" as it should be. There is no "treatment" really. I cannot take NSAID's other than aspirin, and Motrin, etc... the prescription doses is what would possibly help is anything. I am on all of the medications they use, unless we change and go over to another biologic.. I am on Enbrel right now.. along with Plaquenil, prednisone small daily dose, the Enbrel, Methotrexate (which if I do not get ill with an infection they can increase my dose on this), the BC Powder, Colcrys (which I found out can be increased also but it's the latest one so I am sure they are making sure I do not have any side effects first).. what concerns me, is that this may be also what is effecting my lower back and hips also. It does tend to go to those as well as the feet.. About the only thing that would possibly be the answer would be hand surgery..especially on the thumb, and where this cartilage is getting hard... This of course is chronic and will not get better, only worse as time goes by.. unless we have a miracle.. Right now the miracle needs to be for the COVID-19 virus. It was honestly a bit better than I expected.. I felt with the way my fingers are bending and trying to twist on my left hand it would show to be worse. Going to and already does.. make very hard for me to don anything with my hands and fingers..type, open anything, zip anything, you name it, it either is impossible for me to do or hurts like hell to do it. Until this Pandemic is cleared where I can see my PCP, Rheumy etc.. I will not have any answers, but at least now I DO know (THANKS TO MY PCP for sending me the reports and explaining them) :) HE is my lifeline... so all I can do is read more on this & pray all of this Pandemic clears up and PEOPLE can get well, stay well, and try to get back to some type of "good new normal".. although my stuff is certainly not good, right now at this moment, I am not ill with the other and praying I don't and everyone in our town, county, nation and world gets well.. I have to admit I was quite upset when I read these reports.. even though I knew what they would probably say... but life goes on and so shall I. My prayers to EVERYONE!!! Stay In, Stay Well, & let's keep HOPE ALIVE!!!

Lupus Flare, RA Flares, UTI's, Kidney Infection Severe Pain Stiffness, Swelling and the list goes on...

Lupus Flare, RA Flare, UTI's, Kidney Infections... All of the Severe Pain, Tiredness, Fatigue, Joint stiffness, Swelling and WHY Can't they stuff fIND SOMEWAY TO RID US OF THESE HORRIBLE CHRONIC AUTOIMMUNE ILLNESSES????

Of course I get "good news" over the whole endoscopy/Colo-Guard thing... THEN after suffering for WEEKS HONESTLY with what I knew was a Severe Lupus and RA flare(s).... The pain was so horrible I honestly thought my meds were "placebo's".... 

of course I knew better, but the stiffness, pain, in my hips, lower back, ankles, thumbs, wrists, shoulder, all were just about to drive me nuts. I had appts. already with my PCPC, last week, then I see my Pain Doctor this coming Monday and was supposed to also see my rheumatologist Monday so I only had to make ONE TRIP to Dallas, - 

My Heart Doctor and I have an appt at the end of April to discuss the possibility of the pacemaker, which I had been outside during the past couple of weeks, when we had "half decent" weather trying to catch up on killing a back yard FULL OF KNEE TALL WEEDS, from so MUCH rain and more still to come, and trying to do all of the "spring stuff"... but I was in so much pain, so tired, weak, dizzy at times... I just felt it was the Lupus and tried to move through it, until the flares were better. By now, usually I would have went to Urgent Care, got a shot of corticosteroids, the huge 14 dose of prednisone, to get over the flares, but as I said I already felt so lousy, wanted to get stuff done in between the sofa, TV and trying to stand the pain... and get groceries,
etc... 

so when I noticed about 10 days ago or more now, I was having to pee so much, which hot weather, drinking lots of green tea and water, and the Lasix, does that to me... but I noticed it was "way worse" than the usual.. then I noticed I was burning, and the pain began to feel more like "kidney stones" as I had before, but it had been years ago from the last time.

I had just moved back here, and this was before I had my Medicare, but I spent 4 times in one month, at the ER in a neighboring town, with 4 kidney stones,.. trying to get them to pass with lots of IV fluids, pain meds there, then they would sent me home with a few, and within about 5 or 6 days, the pain was back and I was back at the ER... repeating... finally I passed all of them, but it was a nightmare... after that, I have probably had a couple of small ones I passed... but I don't usually get UTI's and if I do - most of the time,

I really don't have "symptoms"... or thought I didn't, but this time I KNEW this was more than Lupus and RA Flares... sure enough, a severe UTI, so shot of corticosteroids and a huge 14 day round of Prednisone, and Levaquin for the kidney infection... I got the meds on Wednesday last week, and even yesterday, I am still not getting over any of it as fast as I felt I would. SO yesterday, my Rheumy's office called late to tell me they are NOT in the OFFICE MONDAY! So that means TWO trips anyway to Dallas, because I have to see the Pain Doctor Monday, my pump has to be filled....

I have SO MUCH I "want" to get done and some I NEED to get done, but I also know I HAVE to get WELL!!!! I am thankful for the good news on all of the colon and endoscopy stuff... really, but I just wished these stupid other CHRONIC ILLNESSES and PAIN would just give me a few months break, I HATE to ask to "go up" on my daily Prednisone which now is 5 mg daily... BUT it looks like if all of the other meds, Plaquenil, MTX, Enbrel, Prednisone small dose, etc d not start working better after these flares I may face a higher dose of Prednisone for a at least while, then taper back down again,... I still have the appt also with the Endocrinologist at the end of the month ... to see if the Thyroid and/or Parathyroid is still too HIGH and what we do about that. From what I've read and researched, the Parathyroid often is cause from a small tumor (usually benign) and may take a small surgery to get rid of... and of course "thyroid: issues run in my family, and medication often fixes that, unless again you have a "goiter" that has to be removed.... so again lots of "stuff" (when it rains does it ever pour)!

More Information Below on the Parathyroid gland and the Thyroid Glands, What they Do in the body, and all of the issues that can happen due to any diseases of these glands....


http://endocrinediseases.org/parathyroid/parathyroid_background.shtml


http://endocrinediseases.org/thyroid/thyroid_background.shtml

Corticosteroids and Severe Asthma.. Clinical Trial by Cure click

http://curec.lk/1MAcSXQ

New Study for People with Severe Asthma and on Oral Corticosteroids

One of the few treatment options for severe asthma patients who are uncontrolled despite standard treatment is the addition of oral corticosteroids. However, regular intake of these oral corticosteroids can decrease the quality of life for such patients. The purpose of this research study is to see whether the investigational drug can reduce the use of oral corticosteroids in patients with severe asthma.
More about the study:

• The study drug is Benralizumab
• There will be 210 participants in this trial

If you are interested, please find the full study details and eligibility criteria listed here.
Eligibility Criteria:
Participants must:

• be between 18 – 75 years old
• have asthma diagnosed by a doctor at least a year ago
• have been treated with inhaled corticosteroids + LABA for minimum 12 months since today + oral corticosteroids for at least 6 months since today
• have had at least 1 exacerbation (worsening of your asthma that requires medical intervention, emergency room visit, an inpatient hospitalization or a change in medications) in the past year

Participants must not:

• have severe lung disease other than asthma
• have HIV, Hepatitis B or C

Please complete the online questionnaire to check if you’re eligible for the trial.
If you’re not familiar with clinical trials, here are some FAQs:

What are clinical trials?

Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.

Why participate in a clinical trial?

You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
Learn why I’m talking about Clinical Trials

Costochondritis - another "possible new problem"? With Me and the Lupus, RA, Sjogren's, Osteoporosis, one may never know....

I "think" I may have "Costochondritis".... I started having pain under my RIGHT arm a couple of days ago, and kind of around to the front of my right chest... it hurts to take a huge breath in, or if I hold my arm a certain way etc... it can bring on the pain. I noticed a moment ago, I had the hiccups... and OMG! WHEW!! Did that ever make it worse..... I figured I must have "pulled" a muscle underneath my right armpit and then around and it even hurts some into my back, but not like right at the arm, where your armpit meets your chest, and then a bit around to the front. an NO, I do not think this is a "heart related" issue at all. I already thought about that, but since I've had 2 of those, I am pretty well, educated on certain things to look for if heart related... that is why I am trying to stress this is under my right arm, kind of around to my right chest, and then into my back some also. I went to pick up Tazzy - my Pug, a couple of days ago. I have to help her onto the sofa,She no longer can jump, so she puts her feet up on the sofa and then I gently pick her up so she can get on the sofa. The other morning, I kind of had an "off" moment, where I lost my balance in helping her up. I really didn't think much of it until I began to get out of the shower a bit later and OMG I was like WHAT THE HECK????? Then of course I have been so busy doing about 15 of more things around the house etc... so I am already sore and achy due to all I am trying to accomplish also. But, ALL of it woke me up at 5AM! MY hips, lower back, my shoulders, under my right arm, and I was so achy and so stiff I didn't think I could even get up and do anything. I really didn't do a whole lot today, other than a few very "easy" things.... anyway, I had not even tried to look up what the "symptoms" might mean, so a bit ago, I though in between a movie and getting some sherbet I would look it up.  I think it appears almost like I do have "some swelling" on back on that side... it appeared to kind of look "puffy" comparing it to my left side under my arm.  The Costochondritis and was about the 1st thing that popped up and that seems to kind of describe what I am feeling. I gather since I am on pain meds, corticosteroids etc... that unless something else plays out or I get worse, or have different symptoms it will dissepate on its own over a few days. If not, I have an Ortho doctor appt on Wed to discuss my "test results" from the discogram, plus Mom is going to the same doctor about her hip severe pain, and cano't barely stand any pressure on it Then we also see our PCP at the same time o Friday, next week... so I will have a chance to ask about it, if it is still here by then.... Happy Fourth to ALL!!!!!!! May our Nation and World over find peace and harmony, and NO threats of any kind.... that is truly my 4th of July holiday wishes... I am probably spending mine either doing some stuff around the house, or resting, depending on how I feel tomorrow morning.... Hugs, Rhia Steele​

Necrotizing Myopathy: Are Statins to Blame? Article from Med Page Today! Something you may need to know more about... "Muscle Pain"? Not sure why? On a "statin"?? This maybe the answer...

 

This is very similar to what I went through a couple of years ago. I was on a statin, NOT for cholesterol issues. But, a statin, a small dose of blood pressure medication, and Lasix has became a "norm" for many who suffer a heart attack. IT seem the combination help to lessen chances of another MI. But, when I went in with severe muscle pain, especially in my calves... plus fatigue, weakness, and so forth, my PCP checked to see what my levels were to make sure I was not suffering not just from Myopathy, but worse, it can turn into Rhabdomyolysis. plus due to the fact that I also suddenly had double vision which grew worse as the days went by, my blood tests confirmed I had "muscle damage" in my blood. Much like the "enzymes" they look for immediately when the suspect an MI, also basically the same he found those enzymes and I should have not had any. Of course my situation was even more complex. I already had 2 "heart attacks" not just one. So, it was even more important to try and do any and everything to NOT risk another. Yet, the myopathy can be dangerous.... and it can cause permanent damage if left unchecked... so I had to go off the station for 3 months, or until my blood work showed NO muscle damage. So, just like "Prednisone" as my PCP calls it for me a "necessary evil"... without it, I honestly think I maybe unable do do much of anything. It helps to keep the severe inflammation down, but also again in turn, now I have severe osteoporosis due to the Prednisone and I am also "pre-destined" to have it due to genetic reasons and even the AI illnesses. Seeing this article once again brings to mind HOW MANY COMPLICATIONS, other illnesses in "tandem"... the meds and their side effects... all come with Autoimmune Illnesses, and arthritic illnesses, and many other chronic diseases, such as FM,CFS/ME and MANY others.... as PATIENTS so MATTER "what" a doctor might "tell me" I AM STILL going to be an EDUCATED patient~~~ I thoroughly believe some of my treatments, and even maybe some of my diagnosis, would NOT be right.... had I NOT became an EMPOWERED and EDUCATED Patient! I also know there is LOTS and LOTS of "bogus" material out there in the WWW... so you truly have to be diligent when it comes to what you think is accurate... but I NEVER hesitate... IF I Read, or see something online I feel "maybe" something my doctor had missed or not thought about and so forth... I PRINT IT, TAKE IT and Ask him to either allow me to ask questions, or let him read it.... or us just discuss the "main" issue whatever I bring in maybe relative to my situation.... of course I AM NO DOCTOR and by NO MEANS think I "know it all" ... YET, when it comes to OUR BODIES most of us especially women KNOW things very well..... Sometime I feel as if I am "educating" my doctors, and sometimes they tell me, that I am helping to bring new light to the subject.

http://www.medpagetoday.com/Rheumatology/GeneralRheumatology/52416?xid=nl_mpt_DHE_2015-07-03&eun=g773630d0r

Osteoporosis And My "Severe" Range Numbers...

I haven't been able to sit and write much. I was gone for a couple of days for a "girls get away" trip with my Mom. We went to OK, to the Winstar and just had an incredible time!

But, with the issues I've had with my very lower spine and hips, the sitting really did me in. I've spent the last two days trying to recuperate, and I am already having massive issues with severe pain, burning, even all the way down into my heels at times. A CT scan shows some issues at L-5/S-1 & 2. But, it is really not able to tell us just how badly it is. I suspect a probable compression fracture or maybe 2 due to the severity of my osteoporosis. It was something I never really thought much about until I had my first bone scan about 3 years ago. I was totally blown away by finding out I had not just the disease, but SEVERE osteoporosis.

I began doing research to find out, due to the RA, Lupus, Prednisone for the illnesses, my tiny bone structure, and several other things all contribute to my having this disease. My hips are totally with it, as well as my "femoral neck" and my lower lumber spine. Thus I feel that is where the compression fracture or fractures could be. Due to having a internal pain pump I can't have an MRI. But, we already know, I have had more than one time of having a "scan", then going on with surgery only to find out the surgery really showed the severity of my problems. My joints are just being destroyed.

Anyway, I had not wrote but a bit about it, so I decided to at least post this, along with this URL:

http://en.wikipedia.org/wiki/Osteoporosis

And I will continue later... ;)

Fatigue, Stress, Pain and the Realms of Autoimmune Illnesses bringing on more or worsened flares

I had just read and article about how many of the medications used for RA; along with Lupus, Sjogren's and many of the other autoimmune illnesses can possibly lessen the disease progression, when it comes to the joints, organs, and body. Yet, there is still a huge issue, that seems is not often controlled, or controlled enough with these. That is fatigue.

Fatigue, and I am speaking of the bone-tired, extremely weary, almost daily type of severe fatigue, that sleep, rest, nor many of the medications we use help or help enough. Those of us with Autoimmune illnesses know this so well. Even though our "minds" want to give us that extra "push" of energy, just like the "spoons" theory, or any type of "idea" such as comparing how many "units" of energy we have, it at times seems to never be enough. We run out of physical "steam" long before we complete all of the tasks we wish to.

It can bring a spiral of feelings and emotions when this happens. Guilt, hopelessness, feeling "less than", or as if you are letting a spouse, job, family, friends and yourself "down" because you just cannot shake that bone tiredness.

Even though we have many things that are out there to help try to battle the bone tired fatigue, and the almost unbearable pain at times, we still are never quite "over" it... or have total relief from any of it.

I've tried to envision having a period of "remission" since day one of finding out about the autoimmune illnesses/syndromes. I really can't think of any "long period of time" that "all" symptoms were gone. It just has not happened. I feel I battle 1,2,3 or more symptoms all the time. They are there underlying, waiting on the time when I am most vulnerable, and then come on with a stronghold.

It matters not, if it is Lupus, RA, Sjogren's, Raynaud's, Pernicious Anemia, MS... and the list goes on for 100's of different AI illnesses, one of them are always right in my face, setting on my shoulders, making my body scream out... I may not "scream" out loud, but my BODY is begging for a "vacation", a time of NO symptoms, to be let off the hook, to take a sabatical from the aches, pains, mental fog, fatigue, rashes, mouth ulcers, skin problems... all of them or even one of them feel like I could just lose it at any given moment. The old adage that we are never given more than we can bear... some of that maybe true... but when you are truly suffering from a daily, moment, hour, minute, breaths space, or with each step you take, something feels wrong. You "feel" whether physically, mentally, emotionally, or any of the combination of those may just push you right over the cliff! I went through that with the most horrid migraine headaches for many, many years. From the time I turned 17 until about 7 years ago, those headaches ruled my life for the most part.

I might be out headache free, whether working, dancing, out shopping, cleaning house, or whatever, and be hit with such a vengance of pain and nausea, that all I could think of, is whatever it takes - GET RID of this FREAKING HEADACHE!!!! Anyone who has any types of these headaches, or those that deal with chronic pain and/or illness(es) can totally relate. I have honestly heard of some with such intractable pain that take their own lives. They have reached a place that being on Earth they feel is just hell... and nothing will ever change that. I never thought I would be able to go even a week without one of the damned things. And I spent many day and nights, either at home, sick as a dog with them, or sick at work, with my head on the desk, or in the ER, begging for them to just make it stop. I went through every type of treatment, doctor, and medication known to man for them at the time. From pain medications (Butalbital) was one my doctors used quite a bit back then, to chiropractors, PT, other stronger pain medications, to an Ergot(which I am highly NOT able to take especially due to my reaction that I had, then my heart attacks) , to having the occipital nerves in the back of my neck injected... you name it, I tried it... and nothing really "worked"... some of them would at least get me to a place that I could withstand the severity of the pain and nausea, but other than when I was pregnant with my son, then 5 year later with my daughter, I thought I would bear the burden of those things on my back until eternity.

Well, I suffered for many years. They would wax and wane... from time to time, I would find deliverance from them, and other times, I felt I was constantly battling a severe headache. Yet, when I FINALLY begin to get treatment for the Autoimmune Illnesses, had several joint replacements, including a shoulder, and also surgery on the other shoulder and elbow... and also cervical neck surgery... and the adding of an incredible pain specialist, now I have what I call a "Lupus Migraine"... they come on when I flare badly with the Lupus. Yet, usually an injection of a corticosteroid, like Solu-Medrol will knock them out. It make take a few days, usually at least 2 days, sometimes 3... with that and then the "high step down dose" of prednisone for 10 to 14 days, will remedy one, until I flare again. I've learned over the years, that just like arthritis, autoimmune illnesses, chronic pain, joint issues... when the WEATHER acts up, you can bet I will have a severe headache, and of course usually the joint pain, stiffness, etc... all come on with high humidity, a dramatic change in the barometric pressure, a dramatic drop or rise in temperature, etc... 99% of the time, can be "diagnosed" by many of us before the weather even reaches us.

So, my own conclusion now about the migraines that I have are "inflammatory" headaches. That is why a corticosteroid injection can get them under control, whereas regular "pain medications" no matter how strong or weak... just will not reduce that inflammatory process behind a "Lupus Migraine"... and FYI that is MY OPINION... and what I have gleamed from them, and the injections. So, I don't know if physicians would agree, but I do know my PCP, takes me seriously. When I call with one of these headaches, he has me immediately come in, get the injection and the script for the step down dose of Prednisone.

Why the headaches somewhat "improved"... well improved is not really the term, they have "changed"... who knows... possibly any and all of the things that have come about with the AI and chronic pain issues... I just know now... or usually (I have had an extremely bad one, and I am not shaking it as quickly as usual.

But, I could probably name dozens of reasons of why they have migrated to being different, age, hormones, illnesses, medications, weather, living in a different place, stress, and on and on....