Side effects of sarcoidosis and sjogrens?

Chest and lungs
1

Hello ~

I have sarcoidosis and sjogrens and perplexed at some of the side effects as my doctor said it's all normal for those who suffer from sjogrens.

I've been feeling like I have creepy crawlys and they seem to settle in my eyelids.  When the problem is at it's peek, it extends to my eyelashes making it hard to even open my eyes.  My doctor swears it's from sjogrens but I'm still not so sure as the feeling is that of a parasite

. 

The symptoms seem to come exactly every month and in a cycle.  First it feels like some kind of a worm then develops into some kind of a creepy with legs...it's an awful situation as when it's at its peek, I truly have a hard time seeing because when I wash off the stuff on my eyelashes, it comes back with a vengeance.  I've tried leaving it alone but the cycle is impossible to ignore.  Please, I'm asking for help because along with dealing with the symptoms of sarcoidosis and sjogrens, this is very depressing.  Anyone...Help please

frustrated

2

Sounds horrible. The bit about the stuff on the eyelashes and in the eyes sounds kind of like conjunctivits. I had that last year and it really wasn't nice so I can totally sympathise. 

It could be related to sjogren's, I'm not sure enough of the symptoms of that other than its another of the autoimmune things 

I got eye drops/gel stuff containing an antibiotic for the conjunctivitis when I had it. And the other thing I found helped for "degunking" the eyes and lashes was to put cotton wool balls soaked in warm water on then and just lie still for about 10 min to let it loosen stuff so it would then come off with another bit of cotton or a tissue. 

As for things being different in the US from the UK, yes as far as health care systems are concerned I know they are. But the disease is every bit the same no matter where in the world and any info or support from anywhere is welcome as far as I'm concerned.

Morag

3

Hi Morag and thank you for responding.  As far as conjunctivitis, that was one of my concerns but my doctor claims it's not that...I've had that before, it isn't pleasant. Also, I  worked for a great number of years in an elementary school and saw that, unfortunately, too much in students that parents send them to school when it's so apparent that the kids should stay home.  Once you get conjuntivitis, you can repeat it just by mere airborne. 

Back to my symptoms, they are really as I described.  It actually hurts when I try to get that off the eyelashes.   I will do the cotton balls remedy and see if it helps.  Thank you for that info.

You  are absoultely right about it being the same disease where ever one lives!  The medical system is totally different and that is good for me in some ways.  It grinds me when I know the money is out there for the doctors to take advantage of and really  study this disease, but they are just so complacent.  One day the world will be a better place....my hope anyway!

Ciao!

Frustrated

4

Hi Frustrated,

Thank you for answering to my topic regarding melatonin. If you check online, you'll find several reports regarding melatonin studies performed on sarcoidosis patients, including in the US. I'm going through an exacerbation right now, and I feel terrible. The main issue is that I have stage 4 sarcoidosis - my lungs have been greatly affected and a new exacerbation will probably lead to a lower lung capacity. I'm trying to find another remedy because I'm afraid that the conventional treatment will lower my immunity too much and reactivate TB; however, I'm not going to take melatonin unless I'm sure it works. As well, I'm going through a series of tests right now just to make sure that it is actually sarcoidosis exacerbation and not TB recurrence. Another important point is that I can only take melatonin for a short period of time, so I might have to stop the treatment before the inflammarion is solved.

Regarding your problem, I think you should see another doctor. I don't say that your doctor isn't good, but s/he might be missing something. Find a good specialist and see him/her. If the new doctor will tell you the same thing as your current doctor, then it's fine. If not, maybe the new doctor will give you a treatment that can help you with your condition. There are some eye tests doctors can perform. You can have anything, from a parasite to a severe infection, such as staphylococcus aureus. Some viruses/bacteria can lead to terrible complications, including blindness. I'm not trying to scare you, but your problem is serious, and I think that your current doctor takes your condition too lightly.

All the best,

Magda

 

5

Hi, I was having an appointment at ENT and on the given day my eyes started giving me the sticking together symptoms and I had a mouth like I was in the Sahara desert, this happens very often the doctor asked why I was drinking a bottle of water and that one of my eyes looked sore, I explained that this happens quite often so he asked if sarcoidosis had ever been mentioned to me.........he reckons it is linked ?

6

Hi Squarky

Your symptoms sound like the symptoms I had before I was diagnosed with sjogrens.  My mouth would be so dry that even eating was a problem because the food would get stuck in my throat...I've had to give myself the heimlich maneuver several times because of the dryness. It got to a point that I wouldn't eat anything unless someone was with me.  My eyes were effected and were so dry that the lids stuck to the eye itself.  That led to a scratch on my cornea and the doctor was concerned I was close to a secondary infection...thus losing sight in that eye.  I had to go daily for treatment and observation. 

Perhaps you could go to an eye doctor to see if there is a possibility of sjogrens.  If that is the case, you would have to see a specialist ie: cornea specialist. 

Anyway, I hear your pain and have actually felt it.  Don't wait too long to decide because it could lead to other problems. 

Sjogrens and sarcoidosis mirror many symptoms.  It was confusing to me because I was dealing with the sarcoid in the nose, eyes and ears ...that area was being hit hard.  Then when I was dx'd with sjogrens, the symptoms were so close but each had a different treatment. 

Anyway, I hope you get the answers and stop that dryness.  The doctor can give you a med that will stimulate the saliva glands and the eyes, there are special drops that can be used...of course they are a prescription.  Good Luck!  Let me know what you found out, please?

Warm regards

Frustrated

7

Hi Magda ~

Thank you for responding.  The topic of melatonin was cause for me to call my pulmonologist yesterday.  He said that if one takes too much of the melatonin it can lead to breathing problems.  Since my sarcoidosis started in my lymph nodes and lungs, he opted for me to forgo that treatment.  He did say more studies need to be made and since it hasn't been approved by the FDA (Food and Drug Administration), there isn't an assigned amount per weight/person.  So, it looked like a promise to me, but not right now. 

I do have sarcoid in my lungs and lymph nodes as well as my eyes, nose and ears...also my gums.  I too am stage 4.  I have an annual heart scan and every 6 mth brain scan.  I am afraid to say the least. 

As far as a good specialist, I'm in the process of changing my prior MD to another one closer to home...at least that's what were are telling them.  The reason we are changing is because no matter where I go for treatment...the problems in my eyes, she would call them ahead of time and tell them I'm having halucinations due to a med I was taking...key  word, was.  Even though the pain doctor (who prescribes this medication and has many years of experience over the doctor) told this particular doctor that if I was going to have halucinations it would have happened a long time ago as I had been on that med for over 5 years. 

Anyway, she would sabatoge my appts before I even had a chance to get an unbiased exam.  I am going to give it to her when we do decide on a new doctor, in fact, we are going to report her to the AMA (American Medical Association) and that will make her either stop or lose her license.

In the meantime, I am going to ask around and see if any of my friends know of someone that could objectively look at my eyes and see what they think. 

I agree with you, I do believe my current doctor is taking this problem too lightly.  I think she doesn't like to be wrong.  That is another long story but I'll tell a short version...I was in an auto accident in 2004 and broke my back and neck was fractured.  She kept telling me to go back to work, it's just muscle strain it'll go away.  Well, after my MRI test came back with the results, she immediately took me off work and sped up the process of seeing specialist which led to surgery fixing my back and neck...she messed up big time and in reality we could have sued her but we didn't.  So, I'm guessing she doesn't want to be wrong with this diagnosis because that would be the second misdiagnosis...oh the EGO's they have! 

So that is it in a nutshell.  Should you hear of any more studies on the melatonin, please let me know!  Are you in the UK or US? 

Thank you again for your reply.

Frustrated

8

Hi Frustrated,

I'm actually in Romania. I don't know how your system works, but here we just go to a private clinic whenever we're getting fed up with our MDs - and it happens quite often. I know it can be expensive, but it's the only thing a patient can do sometimes. Just look online for a good ophthalmologist in your region, ask relatives and friends, and make an appointment. A small problem that can be solved very easily in the beginning may become a serious issue and affect your life for good. This is what happened to me, so I'm trying to give you the best advice I can. I really hope that you will find a good doctor to examine you - for the best results, just don't tell him/her what the other doctor said. In Romania, we can go to a private clinic without any documents and have a check-up without informing the doctor of any previous diagnosis given. Sometimes, this is the only way to get an accurate second opinion. If you tell a doctor the diagnosis given by another specialist, you risk getring exactly the same diagnosis, regardless of what your tests say.

Regarding melatonin studies, there were a few performed by the National Center for Biotechnology Information in the US. I couldn't find too much information about these studies, but I just typed "treat sarcoidosis with melatonin" in Google's search box and one study performed by NCBI poped up. There is some info about dosage and how the study was performed - the concludion is that it was effective. Obviously, more studies need to be done before this med will be accepted as a valid treatment for sarcoidosis. The main problem is that most of us don't have the time and patience to wait until someone decides that it is a good or bad treatment. Meantime, we are "poisoned" with prednisone - I really hate this drug due to the side effects it causes. Taken over a long time, it really destroys the immunity system. Without immunity, our body is like a country without border protection. Maybe it's not the best comparison, but it is the only one I could think of right now. smile

I really hope you'll find a solution to your problem.

All the best,

Magda

9

Magda ~

I really appreciate you taking the time out and sending me this information.  I will check google and find that NCBI study. 

I get you when you say not to tell the new doctor what the other doctor said with our insurance (and it's one of the best in the Nation because it's covered by the MEA after retirement...I'm on disability/retirement) anyway, our insurance requires us to get referral and I've tried calling the referral office and they said they couldn't give me on, my doctor has to order it.  That is where the problems lies.  It is definitely frustrating because she knows all my wants as far as other doctors.  I'm really at a loss with this.  I might be able to call my insurance and ask if they would approve a one time second opinion w/o my doctor having knowledge...that's if the insurance company is sympathetic to my problem. It just may work though.

As far as prednisone, I totally agree that it destroys the body.  It helps with the inflammation however, the secondary problems are sometimes not worth it...gaining weight...hard to breathe because of where the weight is disbursed...I am currently on methotrexate and plauenil which also carries a gamut of secondary problems.  Drugs are just poison...that's just it in a nutshell!

The biggest problem with taking pretty much any kind of a med to curb the side effects of sarcoidosis and sjogrens destroys the immune system.  Mine is shot.  If I even just go to a grocery store, I can almost guarantee catching something.  For instance, I had an appointment with the Dermatologist and a few days later, I had an upper respiratory problem that took a while to get over...a month later, I'm still coughing.

Well, I've taken a lot of your time but so you know, I really appreciate your input.  If you find out anything else on melatonin, please let me know! 

Warm regards

Frustrated

10

Hi Frustrated,

In Romania, they are trying to change the entire health system. Some propositions are to adopt a system similar to the one in the U.S. After reading what you wrote, I hope they won't do it.

Anyways, coming down to our conversation, there is another drug effective in treating different health issues, including systemic diseases - I don't know if it works for sarcoidosis and sjogrens. It is known as "transfer factor(s)" and is produced by different companies, such as 4life, Source Naturals, etc. You can research online what transfer factors are - it sounds really interesting - and how they work. I found out about these drugs a few days back, so I didn't have the time to read about them. 

However, I'm still waiting for my health results, and then, I will just go to see my homeopath. I don't know why I forgot about homeopathy. I solved many health issues with the help of homeopathy in the past, and I know that it can solve inflammation within the body. My homeopath is also a good naturalist and knows many natural remedies. Additionally, she is honest and always tells me what she can or cannot do, so I'm not affraid that she will give me some remedies only to take my money. For instance, I had thyroid nodules and she told me that no homeopathic or natural remedy can fix that. I appreciated her honesty and went for surgery. It was a good decision as the biopsy results showed that one nodule was actually malignant (cancerous). 

So, I will definitely see my homeopath before starting to poison my body with allopathic medicines.

I really hope that you will also find an answer - even if it's not the best one - to your health problems. Not knowing what exactly you have and not finding a treatment that really works can be not just annoying, but also terrifying. 

Take care,

Magda

11

Thanks for the info......I was at ENT for nasal problems when the doctor mentioned if sarcoid had ever been mentioned to me and seemed a bit shocked when I told him I was diagnosed with the skin version in2001.......said he would look into it for me ....that was January ?

12

Hi Squarky ~

If you've been paitent enough to wait since January, I think your doctor isn't taking this seriously.  Sarcoidosis of any part of the body can lead to something very serious...you could try to get an appt with a Rheumatologist as most (I hesitate to say everyone) who have sarcoidosis, are dealing with inflammation.  I think, go with your heart, if you think it's been long enough for your main doctor to get with you, then take matters into your own hands and set yourself up with the one who WILL take you serious, Rheumatologist. 

Good Luch Squarky!

Let us know how you're doing.

Frustrated

13

Hi Magda ~

Sorry to hear about your thyroid...did they get everything as far as the one nodule that was malignant?  I had a bi-thyroidectomy and I'm hoping that the other side doesn't have to come out. So far, so good.

I have a good friend who is always trying to take me to her homeopathic therapist.  I'm thinking, after your post, maybe she is right, I should at least try, right?

I just read up on 4Life transfer factor and 4Life transfer Plus.  The testimonials all seem positive.  I'd have to talk with my Rheumatoid doctor to make sure it won't interfer with what I'm currently on....I would love to get off all meds!  That would be a feat!

Anyway, thank you for responding and giving me some other way to possibly help my immune system.  You'd think my doctor would put me on something or at the very least tell me there's stuff to help the immune system...nope...their moto is get them in and get them out!  Oh well, can't change them but I can change myself!

Warm regards,

Frustrated

14

Hi Frustrated,

yes, the entire thyroid was removed. The nodules were on both sides. I had a big one (5 cm) on the right lobe and two small (0.5 and 0.7cm) on the left lobe. Surprisingly, one of the small nodules was actually cancerous. I'm on thyroid hormone relacement therapy and everything's going well.

Regarding going to a homeopath, it is a good decision. Even if you will continue to take the allopath drugs, homeopathic remedies will definitely help you get rid of many annoying symptoms.

You can aslo talk to your doctor about transfer factors. However, most allopathic doctors are against everything that it's not in their books. So, most probably, s/he will tell you that they won't work. Anyways, it is better not to take any drugs if you don't know the impact they'll have on your overall health condition.

So good luck and I hope things will get settled down soon.

If you go to a homeopath, please just let me know what s/he says, if your health problems can be solved with homepathic remedies or not.

15

I am seeing immunology in February 15 a long time to wait but also got myself on the cancelation list.Seen one of my local doctors last week as I was having inflamation problems again so I mentioned my diagnosis of sarcoid again.......she looked on computer and said because it was 2001 when I was diagnosed it would be on my paper records somewhere and that was that!!!

16

I can't believe I didn't respond to this post!  She seems to have lost her way!  Doctors take an oath to help paitents...jeez, you could have done tha that yourself and not have been troubled with setting the appt with her and following through w/going to see her.  Sounds like she needs a can of "whoop arse" as they say in the States :P  Sorry, I couldn't resist!  I sure hope you get to the bottom of this and you get to feeling better everyday.

Warmly

Frustrated

17

It sounds very much like what I experienced last summer. I ended up

going to a naturopath doctor and we both agreed it was a parasite

infection. He paced me on worm wood and cina and my symptoms

resolved in a month or so. They were horrible symptoms and all

throughout my body. Medical doctors treated me like I was crazy which is what led me to naturopath advisement. I am considering another round of dosing as I believe a half cleanse is important now that I experienced

this. I hope my story helps.