Wellness

[Ketra]

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@LilacTree wrote:

I called my new rheumatologist’s office  to get the results of my massive (15vials) blood tests.  I didn’t want to post it to my good news post.

 It seems I have lupus.  The fatigue is mostly attributed to that, not RA, although it could be a combination of both.  Unless there is an earlier cancellation, my next appointment with the rheumatologist is not until the first week in August. 

It’s quite rare to get a diagnosis of lupus this late in life, but I did think of it when this “butterfly rash” began appearing across my nose and cheeks. I was hoping it was a side effect of the Macrobid that I took for the UTI I thought I had.

Although, as with all autoimmune diseases, it is not curable, it can be managed.  

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@LilacTree I’m very sorry you have been diagnosed with this awful disease, but I know you are happy to finally know what the heck is going on. I read that you have been taking Macrobid, also known as nitrofurantoin. Certain drugs can induce Lupus and many other autoimmune diseases in people that are genetically susceptible. 

The drug you were on is one that is known to induce Lupus in susceptable people like you and myself. It’s one of the worst side effects that GPs never inform you about usually because they don’t know, and don’t take the time to look up your family history and compare to the worst side effects of the drug they are prescribing. It take too much time. Rhuematologists know of these drugs so he or she can answer any questions you probably have.

I believe drug induced autoimmune disease is very common now. 

lupusuk.org.uk has some great information about drug induced Lupus (DIL), (once you get to the site type in drug induced Lupus in their search window. I pulled the drug list included below off of their website. It lists the drug you were on as possible association, but it comes up often when you do these two google searches:

does nitrofurantoin induce lupus in genetically susceptible people?

drugs that induce autoimmune disease in genetically susceptable people.

 I’m dealing with different autoimmune diseases but a lot of the symptoms are the same. I have been on several of the autoimmune inducing drugs so it’s likely mine being triggered late in life was due to one or more of these drugs. I stumbled on this information when doing in-depth research and asked my rheumatologist about it and he confirmed it. He’s a great rhuematologist and a good man. I believe none of them will bring it up first because the way our current medical system is, nothing can be done about it until you see a rhuematologist, and they can only treat it. There are ways to stop doctors from prescribing these drugs to genetically susceptable people, but those safeguards are not yet in place and may never be. Anyway, I will be happy to answer any questions you may have later on or if you are more comfortable just discussing things with your doctor that’s fine too. I just wish someone had told me all about this stuff way back, but at least I finally learned what I needed to know on my own. I just want you to know that I’m here if you have any questions or if I can help in any way. This is a lot of information so don’t try to digest it all tonight. The Lord will help you to come to terms with it a little each day, and he will be right there with you through all your ups and downs. 

TABLE 1 – IDENTITIES OF LUPUS-INDUCING DRUGSProven Association

Chlorpromazine. Hydralazine. Isoniazid. a-Methyldopa. Minocycline. Procainamide. Quinidine.

Possible Association

Acebutolol
Adalimumab
Atenolol
Carbamazepine
Cimetidine
Dapsone
Diphenylhydantoin
Etanercept
Ethosuximide
Hydrazine
Infliximab
Labetalol
Lamotrigine
Levodopa
Methimazole
Mephenytoin
Metoprolol
Nitrofurantoin

Oxprenolol
D-Pencillamine
Pheneizine
Phenytoin
Pindolol
Primidone
Practolol
Propanolol
Propylthiouracil
Quinidine
Sulphasalazine
Sulphonamides
Thiamazole
Timolol
Trimethadione
Tryptophan
Valproate
Zonisamide

Weak Association+

Acetyl-L-carnitine
Allopurinol
Amidarone
5-aminosalicylic acid
Atorvastatin
Bupropion
L-Canavarine
Captopril
Cefuroxime
Celiprolol
Chlorprothixine
Chlorthaidone
Ciprofloxacin
Clobazam
Clonidine
Clozapine
Debrisoquine
Docetaxel (taxotere)
Enalapril

Estrogens/oral contraceptives
Ethylphenacimide
Fluvastatin
5-Fluorouracil
Gembibrosil
Gold salts
Griseofulvin
Hydroxyurea
Interferon-a
Interferon-ß
Interleukin 2
Lamotrigine
Lansoprazole
Leflunomide
Lisinopril
Lithium
Lovastatin
Methimazole
Methysergide

Nafcillin
Nifedipine
Nitrendipine
Paclitaxel
Penicillin
Phenylbutazone
Reserpine
Rifampicin
Simvastatin
Streptomycin
Tegafur-uracil
Terbinafine
Tetracycline
Ticlopidine
Tocainide
Zafirlukast
Ziprasidone

TABLE 2+: SEROLOGICAL AND OTHER FINDINGS IN DIL AND SLE

[LilacTree]

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@Drythe wrote:

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@Trinity11 wrote:

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@Drythe wrote:

@Trinity11   I miss @Noel7  too.

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@Drythe ...4 years ago this company began hosting the boards and many posters got to come back. I was hoping maybe some day Noel can return if the same thing happens. I often think of her and wonder if she is OK.

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@Trinity11 

Once in a while when I received a  ♥️, or response from Noel, I felt that I had ‘done Well’.

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@Drythe @jubilant @Trinity11

I miss her too.

[SXMGirl]

@LilacTreeI have been reading your journey and am at least glad that you have a diagnosis and that there is treatment that is manageable.  While I know nothing about either, I hope that you have the "better" of the two, if there is one.  I also hope that your have the necessary medical treatment in order to feel better.  I understand fatigue.

[LilacTree]

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@SXMGirl wrote:

@LilacTreeI have been reading your journey and am at least glad that you have a diagnosis and that there is treatment that is manageable.  While I know nothing about either, I hope that you have the "better" of the two, if there is one.  I also hope that your have the necessary medical treatment in order to feel better.  I understand fatigue.

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@SXMGirl 

only those who have it can understand it. we’ve all heard the criticism.

[LilacTree]

@Ketra 

I will be happy to discuss this with you any time.  I no longer get shocked by anything that happens to me, as I have a whacky immune system.  Thanks for the list . . . But this is why I hate to take meds.  I always get a bad reaction, perhaps not as bad as this, but always something.

Ironically, I have had no relief from the UTI symptoms, but I got this instead . . . Lucky me.

Thank you for your informative post.

[butterfly123]

@Ketra 

I appreciate your detailed message and information. I learn something everyday from posters like you.

 Thank you 

🦋

[Susan Louise]

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@LilacTree wrote:

@Susan Louise 

HaHa, SL!!  My prior high was ten vials!  However I am really used to this.  This lady was very gentle and I hardly felt anything .  Just one stick in one vein!  Believe it or not she works her little lab right in the doc’s office and is 85 years old!

 On the other hand at the ER yesterday, I had a male nurse who just jammed it in the IV portal.  He was nice about it though.  Fortunately, needles don’t bother me.

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@LilacTree   I think you meant to reply to @Chrystaltree (post #2 in this thread)...not to me.

I am familiar with having many vials taken...lung cancer survivor

[Ketra]

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@butterfly123 wrote:

@Ketra 

I appreciate your detailed message and information. I learn something everyday from posters like you.

 Thank you 

🦋

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@butterfly123  You’re very welcome😊

[LilacTree]

@Trix 

As I do also. Once you get one, the others follow.  I always thought I had Sjogrens, but it came up negative on the labs.  Dry eyes and mouth occur for many reasons.  Now I don’t know why I have them and you know what . . . .?  I no longer care.  I am grateful for my long life and feel it doesn’t matter what I die from.

[LilacTree]

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@Susan Louise wrote:

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@LilacTree wrote:

@Susan Louise 

HaHa, SL!!  My prior high was ten vials!  However I am really used to this.  This lady was very gentle and I hardly felt anything .  Just one stick in one vein!  Believe it or not she works her little lab right in the doc’s office and is 85 years old!

 On the other hand at the ER yesterday, I had a male nurse who just jammed it in the IV portal.  He was nice about it though.  Fortunately, needles don’t bother me.

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@LilacTree   I think you meant to reply to @Chrystaltree (post #2 in this thread)...not me.

I am familiar with having many vials taken...lung cancer survivor

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@chrystaltree 

Please note!!