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abscat
12-27-2011, 10:36 AM
Hi everyone,

I've been newly diagnosed with lupus after suffering weird, horrible symptoms for about 8 months. I'm glad to have a diagnosis, but while I've been started on 10mg of prednisolone per day (since 17 Dec) and 200mg of hydroxychloroquine sulphate per day, none of my symptoms have diminished so I'm feeling really disheartened and depressed. Most of my symptoms were in my head (I don't mean I'm making them up) and consisted of dizziness, weirdness when I swallow, numb/tingling cheeks, feeling like I'm a puppet and my head's just on string so feels like it's bobbling about too much. I feel like focusing is a real effort and my eyes often don't seem to focus together. I've also had this 'weird' feeling in my body I find it really hard to describe, it doesn't hurt exactly, but when I try and go to sleep I jolt awake every time I relax. I don't know what it is, but alcohol seems to make it worse so I've stopped drinking (although drinking helped my head symptoms). Could it be something to do with my liver? Do any of the symptoms I'm describing resonate with anyone else? If so, is there anything that I could try to alleviate them as I find them really hard to continue with day-to-day.

I'd be really happy to hear from anyone who's had lupus a longer time as I've heard through my limited research that perhaps altering my diet could help. I also suffer from ulcerative colitis, which seems like a walk in the park compared with the unbearable lupus symptoms :( Sorry for the depressive comments but it's really getting me down and I find it hard to explain to anyone else. And my rheumatologist was really cold and unsympathetic.

Really would be grateful for any tips or advice, thank you in advance :)

Abscat

tgal
12-27-2011, 11:11 AM
Hi and welcome to WHL! The first thing that you need to know is that plaquenil (hydroxychloroquine) takes 4-6 months to work. It is not fast but it does help a lot for most people.

The "hard to focus" thing is something you will read a lot about. On the low end we call it "brain fog". There is actually a funny thread called "you know you have brain fog when" in here that will make you chuckle but also see that we all have it. On the other end of the "fog" spectrum is what is called CNS involvement and that is when the Lupus itself begins to affect our central nervous system. The good news is that the CNS involvement is rare so it is most likely the fog. I would suggest seeing a neuro along with your rhuemy since you speak of numbness and tingling as well.

As for altering your diet, please be careful when searching for "non traditional" and herbal remedies for Lupus. At best they do nothing and at worst, they can kill. A healthy diet is what most doctors recommend for Lupus patients unless there are other type issues (many of us have multiple AI issues) and at that point they will tell you what is best to eat and not eat.

The best tip I can give is that you might want to try staying out of the sun and/or florescent lighting. If you can't stay out then use a high (75 -100 UV protection) sunscreen. A majority of Lupus patients find that UV exposure makes them feel worse

Don't ever say you are sorry for coming here to talk. That is what we are here for! We are glad that you found us and I look forward to getting to know you

SleepyInSeattle
12-27-2011, 11:12 AM
Hello and welcome!!!! I am sure you will find lots of great comfort and advice here - we all have our own unique experiences of Lupus but it seems like almost anything you experience, SOMEBODY around here will also have encountered at some point, which is very comforting.

I was just diagnosed maybe 5 months ago after YEARS of problems. These autoimmune diseases are complicated and it may take your doctor a long time to sort everything out....it's frustrating, but seems like it's definitely worth sticking through the process. I'm sorry your doc has a bad "bedside manner", though - that sucks. Sometimes good docs are that way - and sometimes they are just lousy docs. Hopefully you have other options in case this doc doesn't work out - you will need to have a good working relationship with whoever is monitoring your health.

So far my blood work and so on indicates that none of my organs are in danger, so I am really trying to avoid taking Prednisone - I have no advice for you there. But the hydroxychloroquine (also called "Plaquenil") can take up to 6 months to really take effect, so don't get discouraged about that one quite yet. Give it time.

Everybody's symptoms are different, but I can relate to some of your experiences...some of my symptoms are neurological. Dizziness, a weird "fishbowl" feeling walking through life. I also have something called Sjogren's (similar to Lupus but with some differing symptoms - it is not unusual for people to have both), which can make it difficult to swallow sometimes. The sense of "brain fog" can be really wicked. A couple of years ago, way before I got diagnosed, I was in a terrible flare and on two separate occasions I found myself driving down the highway about 15 minutes from my house with ZERO memory of how I got there and NO IDEA where in heck I could have been going. I just turned around and went home - very shaken. this was amidst a bunch of other weird stuff going on, too - headaches, fatigue, etc...went to my doc, neurologist, blah blah blah....anyway, we now know it was Lupus nibbling on the ol' neurons, but at the time it was just weird and scary. The GOOD NEWS is that I have not had a flare like that since then, though I do have less serious ones.

I find that I am very sensitive to alcohol, or not - depending on where I'm at with the disease activity. Sometimes I can't have ANY alcohol - sometimes a very small glass of wine is okay - sometimes I can have two in the course of an evening and be fine. I am slowly learning to listen to my body, and it sort of tells me when it's okay and when it's not. if you pay close attention, now that you know what's going on, you will get better at understanding how things work for you. Not every single time, but sometimes.

In any case, I would mention all this to your doctor. I am not a "journaling" person, but I do make notes for myself on my cellphone memo function when I notice symptoms....that way, when I go see my doc, I don't forget anything or lose it in the Brain Fog.

As for diet, that's a totally individual thing. Seems like we all share the problem of a hyperactive immune system, but what things in particular trip it off is a VERY individual issue - which is part of what makes Lupus so mysterious. My doc thinks that wheat gluten is probably one of my major triggers, so we are experimenting with that. I am going gluten-free for 3-4 months (it can take that long or longer for your body to "heal" from gluten exposure), and then I'll eat pasta or a donut or whatever - if it triggers a flare, we know it's a problem. The standard tests for Celiac or typical gluten allergies don't necessarily show the sort of sensitivity that set off a Lupus flare, so an elimination diet is really the only way to go.

But for some people it's not wheat, it's dairy, or soy, or whatever - or maybe not even a food at all.

Hopefully your doc can help you out with that, and maybe refer you to a nutritionist to try various things. But be careful about doing that on your own....anything you try should be monitored by your doc so s/he can do the blood tests, etc that will give you some hard evidence of what's going on in your body.

i hope all that helps....you are definitely not alone, and you'll get better and better at this. it's hard but be patient and give your meds time to work, and give your doc time to figure out how YOUR Lupus works, since it is different for everyone who has it. It may take a while - just keep at it.

In the meantime, best wishes and Happy, Healthy New Year!!!!

magistramarla
12-27-2011, 07:40 PM
Hi Abscat,
Sleepy just said everything that I was about to type, so I'll just say welcome to WHL.
Check out the "stickys" at the top of each forum - they are full of great information.
Hugs,
Marla

steve.b
12-27-2011, 09:06 PM
hi abscat,
welcome to our cyber family.


the first two ladies have some very, very good advice.
please re-read there posts.

i have had lupus for over 35 years, diagnosed just over 3.

i am not a doctor, so i can only talk about my experiences.
diet does help, as does anything that improves your overall health.
i have tried quite a few different diets.

remember that lupus can and usually does everyone differently.
many people although not complete celiacs,are suseptable to gluten.
so low gluten products can help.
the same with acidic food.
if you are having bowel issues, (i do regularly).....
dense hard to digest foods are out for a while.

everyone is different, our reation to lupus is different.....
some people here are the exact opposite, this is what makes lupus so hard to diagnose and treat.

my rhuematolagist was talking to me about alcohol.
any drug that creates a chemical reaction to work.....
has the chance to not work properly when alcohol is in our system.
this site does not preach abstanance, and many of us drink.
but moderation and timing your drinks is important to me.
plaquinel is one of the drugs that does not work with alcohol.
so i drink, so i have no alcohol in my system when i take plaquinel.

again welcome to our family.

abscat
12-29-2011, 04:10 AM
Hi everyone,

Thanks very much for your responses. It's nice to know that I'm not alone :) It's hard to talk to my friends and family about the symptoms as they're so random and hard to explain! Brain fog is a good way to describe it and gives me an excuse for my 'goldfish' memory/brain that I always seem to have had. I'm wondering whether to increase my dose of prednisolone to 20mg per day but will go and see my doctor and ask her about that before taking matters into my own hands. I still have to have further blood, urine and MRI tests to better decipher everything and am seeing a neurologist in early Jan so will try and explain all my symptoms to them.

I have previously tried a diet called the Specific Carbohydrate Diet (SCD) for my ulcerative colitis, which cuts out all complex carbs. I don't suppose it would work for lupus but it is wheat-free so I might try it, or at least try going wheat-free for a period of time.

I've been in touch with my gastroenterologist and he says I can transfer my lupus treatment to his hospital in London which I think I will do as it makes sense to have all the treatment taking place in the one location so they know what medication I'm on etc.

I'll post again to let you know how I'm getting on and if I see any improvements - it's nice to know there are people I can come to and talk about this stuff to!

Thanks again everyone,

Abs x

chinadoll
12-29-2011, 08:03 AM
Hi, Abscat, and welcome!

I read all the other posts and I must say they were helpful, even to me, a long-time Lupus sufferer! I have had Lupus and a couple of other autoimmune diseases for many years and have really had some difficult times. I wanted to reply to your latest post right away because you mentioned possibly raising your prednisone dosage to 20 mg/day. I have been on high dose steroids (prednisone, IV solumedrol, etc) multiple times over the years, and I can definitely say do NOT make ANY changes...either an increase or a decrease...in your prednisone dosage without your doctor's instruction to do so. Prednisone, while very beneficial, has some nasty side effects that can be very difficult to deal with if you don't follow doctors' directions to the letter. Hopefully, you won't have to be on it very long because there are a whole host of reasons why you want to eventually wean off or at least keep the dosage as low as possible to keep your flares at bay.

As for diet, a couple of folks mentioned problems with gluten and dairy and they are right on track with what my doctors are telling me. In fact, my doctors have linked my autoimmune illnesses to gluten, dairy, and night-shade sensitivities. I have been completely gluten and dairy free since June and while it has helped with my GI symptoms, the damage that so many years of ingesting foods that have literally been poison to me, will take far longer to heal. I have been frustrated with the slow process, but as my doctors say...my health didn't get to this place overnight, and it isn't going to go away overnight either.

In addition to following a strict gluten-, dairy-, night shade-, and refined sugar-free diet, I am also eating only organic foods and taking folate, B12, Vit D and calcium due to deficiencies in those areas. Because I cannot take plaquenil nor prednisone, I have just started methotrexate to try to get this flare I am in under control.

The best thing you can do is follow your doctor's orders, rest, avoid UV lighting and stress, and eat a healthy diet. I hope this helps, and that you feel better soon!!

(((Hugs)))

tgal
12-29-2011, 08:43 AM
Good morning,

I do want to make each of you aware of a policy we have here at WHL. "Lupus Diets" are not allowed because there is no such thing. The Lupus Foundation has said that, in general, a heart healthy diet is best for Lupus patients since there is no diet that has been proven to help Lupus itself. Since many people with Lupus have other issues their doctors may place them on a specific diet to help with those issues (such as GI issues) but we want to always make it clear that there is no "Lupus Diet".

Too many people and places try to sell us on an easy fix for our disease. There isn't one. The last thing we want to do is have someone come here looking for help and, in a moment of desperation, make a change or try something that causes them more harm. Too many of us have become worse, and even died, hunting for the magic bullet that will take all of this nastiness away. We really try to stay away from the diet talk because too many times it is not understood that diets are a personal thing between the patient and their doctor. We cannot risk causing others to harm themselves looking for a quick fix that does not exist.

Please understand that no one is in trouble and no one is mad. We understand that you are new and so I wanted to take a moment to clarify the "diet" issue

!

chinadoll
12-29-2011, 08:58 AM
Hi, tgal...

Thank you so much for clarifying for me...I do appreciate your position on this and I want to assure you that I receive your admonishment (for lack of a better word) with the grace with which it has been given. I apologize if it looked like I was recommending a diet, I was really just trying to share what my doctors are doing for me, just as I would hope that I can share the same when it comes to any other treatment I am receiving. Obviously (and sadly), there is no "easy fix" or we would all be well by now, right? Anyway, thanks for all your hard work to keep us all on track...I appreciate it!! (((hugs)))

tgal
12-29-2011, 09:13 AM
Hi, tgal...

Thank you so much for clarifying for me...I do appreciate your position on this and I want to assure you that I receive your admonishment (for lack of a better word) with the grace with which it has been given. I apologize if it looked like I was recommending a diet, I was really just trying to share what my doctors are doing for me, just as I would hope that I can share the same when it comes to any other treatment I am receiving. Obviously (and sadly), there is no "easy fix" or we would all be well by now, right? Anyway, thanks for all your hard work to keep us all on track...I appreciate it!! (((hugs)))

Hi Chinadoll,

Thank you so much for understanding. Diet and herbs are really the only thing we stand firm on and there is a reason for it. I am going to paste here a copy of a post written by our founder (which is a sticky in the medication section) that explains why we feel so strongly on this. There is tons of "wiggle room" on almost every other topic this one just hits close to home and we never want to cause harm to another. The post below doesn't specifically speak of diet but too often the diet topics go into "this can fix you" and, as we know, it isn't true.

We are so glad to have you with us and look forward to your input and the sharing of your experiences!

http://forum.wehavelupus.com/images/icons/icon1.png How To Get Banned From WHL


Dear WHL Family;
There are several ways that you can get banned from WHL and they are listed in the board rules. However, I wanted to discuss one way that will ensure a permanent ban from this site:
If you submit a post that, in any way, intimates that you have found, are the recipient of, know of, have possession of, a CURE for Lupus that does not include regular supervision by a medical doctor or the continuation of medical treatment and prescribed medication, then you will be immediately banned, for life, from WHL!
If you submit a post, making the above claims, and asking members to contact you, via your e-mail, so that you can peddle your supposed cure, you will be immediately banned, for life, from WHL.
If you berate, demean, or otherwise belittle a member of WHL who gives you a warning, who exposes your intent, or who requests that you discontinue or modify your approach, you will be immediately banned, for life, from WHL!

Now, let me explain my reasons:
WHL is a support group where we provide comfort, support, understanding, research, answers, and acceptance for anyone suffering from an auto-immune disorder.
This can be a very frightening disease which can, in its worst forms, still be fatal. It is a chronic disease, meaning that we may have some form of it for the remainder of our lives.
As such, many of us suffer greatly due to this disease and we often reach a point where we simply want our lives back, we want the disease to go away, and we want to be healthy again. In our efforts to do this, we are often willing to try almost anything that promises that it will accomplish this for us. Knowing of this possible desperation, there are those who claim that they know of a cure, that they've been cured, that their sister, cousin, mother, brother..whatever, has been cured. They also go so far as to claim that our current medications are poisoning us, that our doctors are liars and are only after our money, and that we (ourselves) want this disease because we are unwilling to try their proposed cures. These people are (as Rob so eloquently described them) 'Snake Oil Salesmen' and 'Charlatans'. People who prey upon the desperation of ill people in order to make money.
My daughter, who lost her life to Lupus, in her desperation while away at college, stopped taking her medications and tried one of these proposed cures. As a result, she suffered irreparable damage to her heart (which was being protected by the Prednisone that she abruptly stopped taking in order to try the remedy suggested by one of these Snake Oil Salesmen). A short time later, she lost her life when the damage to her heart caused her heart to just stop functioning entirely!
So, I am personally and vehemently against any of these people being allowed on WHL. I will not allow them to prey upon any family member here. WHL is here to offer protection and to be a safe place for each member. As such, Rob, Tgal, and I have formed a wall around each of you to shield you and to protect you from persons who do not comply with the founding principles of WHL!
Thank You All for all that you do in support of one another!

Peace and Blessings
Namaste
Saysusie

chinadoll
12-29-2011, 01:00 PM
Tgal:

I am so happy that you posted this because although it is available under a sticky, there is so much valuable information on this site that it would be easy to overlook something. I did notice that I wasn't the only one that mentioned diet, even gluten and/or dairy intolerance...but hopefully none of us implied that it was a cure. I can see, though, how someone that is new to the world of Lupus would be willing to try anything someone suggested just to feel better. So I will definitely word my posts more carefully!

I do want to say that my own diet restrictions were made only AFTER I had extensive testing done and under strict medical supervision. As I mentioned, I am still taking medications (am currently on methotrexate...ugh!) and following doctors orders implicitly.

I feel very strongly about this subject as well...over the years I have heard all kinds of crazy things that claim to be a cure for Lupus. I commit to you...you can always rest assured that I will NEVER make any claims of a cure, nor will I ever encourage anyone to do anything at all outside their doctor's recommendations. I am here for support and to give support. I look forward to getting to know you all better.

(((hugs)))
Kathie Lea

debbie-b
12-29-2011, 01:19 PM
Kathie Lea,

You sound like an awesome person. I just wanted to say that and welcome to WHL.

Debbie

chinadoll
12-29-2011, 02:04 PM
Debbie, you just made my day. THANK YOU!

magistramarla
12-29-2011, 02:14 PM
Kathie Lea,
It is interesting that gluten and lactose intolerance seems to go hand-in-hand with AI issues, isn't it?
My own docs have never tested for either of them, but I have two daughters who are dealing with them. Hillary has polycystic ovarian syndrome, and her doc tested her for intolerances. She was lactose intolerant as a baby, and that has come back full-force. She also turned out to be gluten intolerant.
Kayla was diagnosed with IBS, and her doc has suggested checking for gluten intolerance. Now her six year old son is having GI issues, and his doc is wanting to check for gluten intolerance, too.
Because of my girls' experiences, I do tell people who are having severe GI issues to bring this up to their docs.
Diet changes can never cure Lupus, but they can sure make a difference for folks who have gluten or lactose intolerance, and if we feel better, we can handle our meds and fight the AI issues better. Unfortunately, many of us have to put up with docs who ignore these side issues.
You are lucky that yours seems to be covering all the bases.

I'm like you - I can't take prednisone, or any steroid. I've had Avascular Necrosis, so no steroids for me. Plaquenil seems to be working for me.
Hugs,
Marla

tgal
12-29-2011, 02:16 PM
I have to agree. You are an awesome person. As I said in PM I never, in any way, thought you were trying to cause others issues. This is a nasty disease (and those that often go with it) and I am so glad you are finding things to help!

chinadoll
12-29-2011, 04:23 PM
Thanks for your posts, ladies! Tgal, I am still learning how to navigate this site. If you sent me a PM, I didn't get it...or at least I don't know how to find it! lol So please don't think I'm just not responding...I simply haven't found your message yet! :-)

Marla, I too have had avascular necrosis, one of those nasty results of taking high dose prednisone for far too long. And for some reason I am VERY intolerant to Plaquenil...so my only alternatives until something better comes along are Methotrexate and Imuran. Anyway, yes...I agree that if someone is having GI issues, it wouldn't hurt to be tested for Celiac, gluten intolerance or dairy intolerance (which is defined as allergy to all milk proteins such as casein, whey, butter, etc. vs lactose intolerance which is intolerance to lactose only); especially if there is Celiac Disease in your family. I do know that such intolerances can lead to all sorts of problems and it is well worth checking into. One thing is for sure...I have definitely learned how to cook in a whole new way! We are having our first family gathering since some of us received our results (our mom has Celiac Disease so I, most of my siblings, and our kids have been tested), and I am anxious to see how creative everyone will be with their recipes! It should be fun! At the very least it will interesting!! :-)

Be blessed...Kathie Lea

tgal
12-29-2011, 05:39 PM
Thanks for your posts, ladies! Tgal, I am still learning how to navigate this site. If you sent me a PM, I didn't get it...or at least I don't know how to find it! lol So please don't think I'm just not responding...I simply haven't found your message yet! :-)

Marla, I too have had avascular necrosis, one of those nasty results of taking high dose prednisone for far too long. And for some reason I am VERY intolerant to Plaquenil...so my only alternatives until something better comes along are Methotrexate and Imuran. Anyway, yes...I agree that if someone is having GI issues, it wouldn't hurt to be tested for Celiac, gluten intolerance or dairy intolerance (which is defined as allergy to all milk proteins such as casein, whey, butter, etc. vs lactose intolerance which is intolerance to lactose only); especially if there is Celiac Disease in your family. I do know that such intolerances can lead to all sorts of problems and it is well worth checking into. One thing is for sure...I have definitely learned how to cook in a whole new way! We are having our first family gathering since some of us received our results (our mom has Celiac Disease so I, most of my siblings, and our kids have been tested), and I am anxious to see how creative everyone will be with their recipes! It should be fun! At the very least it will interesting!! :-)

Be blessed...Kathie Lea

LOL PM here is the emails that you and I exchanged earlier. They are just called PMs here.

magistramarla
12-30-2011, 12:48 PM
Kathie Lea,
The interesting thing is that I've only had prednisone once or twice in my life, and that was long before the AI issues.
I did have a couple of cortisone shots in that knee for bursitis before the AVN showed up. If the steroids caused it, then I'm really sensitive to them.
Of course, I'm sensitive to lots of meds, so no surprises there.
I used to take MTX injections - they really knocked me out for a day.
Hugs,
Marla

kim,l
12-30-2011, 04:01 PM
welcome kathie lea whl i was diagnosed with lupus 4 years ago but have had it all my life i take prednisone and plaquenil and mtx. we all seem to suffer from different issues as well i am gluten intolerant. but my medication has been my saving grace even though i get side affects they are worth it to lead a somewhat normal life, i agree with rob and susie and tgal though you are not one of them we have had some real uninformed people at times trying to sell us a cure of which there are none and some of our new people are so desperate to have that instant cure it frightens us that they will grab at these false hopes. and put there lives at risk. it is nice to meet you and i hope we get a chance to chat i look forward to getting to know you . you are a welcome addition to our whl family hugs.

kim,l
12-30-2011, 04:05 PM
welcome abscat to our whl family we are here to help as much as possible to give you the support you need when you nedd it hugs